Category Archives: Policy

A realistic discussion of the infrastructure of “dementia rights” is needed for powerful advocacy

Amidst the hullabaloo of social enterprises clambering to mount the bandwagon of the latest fad to make a quick commissioning buck in praise of ‘rights’, it’s easy to forget the actual importance of dementia advocacy services. I’ve long felt that the two biggest problems with ‘dementia friendly communities’ apart from the obvious concerns about ‘what is dementia?’ and ‘what is a community?’ is the concern that the dementia friendly communities and their powerful branding might be viewed as some cost neutral alternative to real local services, and the relationship between the State and the community remained poorly defined.

LBC presenter Shelagh Fogarty  (@ShelaghFogarty) yesterday asked a question to her audience, ‘What do you think is important in a community?’ You might not miss the shutting of a local butchers if an out of town supermarket opens up closeby, but you might miss a legal aid centre if you need to query some claim such as in the personal independence payment.

There is a meme circulating on Twitter at the moment that this photograph of dogs sitting round the board room table represents the ‘decision making body’ of laws about healthcare of cats. This was supposed to mock Donald Trump’s latest defeat about healthcare in the US Congress. This reminded me of how global dementia policy is framed for the most part by people already with substantial power and influence who don’t actually live beyond a diagnosis of dementia nor are care partners.

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The law can be an ass, and its problem is that it represents only source of rights; but within that, there are various often conflicting sources of rights.  As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.

Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.

But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.  People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.  The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty. And views differ. Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’. In a world where experts are largely derided and not invited into the committee rooms of revolving-door celebrity attendees of dementia policy decision-making, I feel it is rather important to understand where some of the problems have come from.

Centrally, the law domestically for us, the Mental Capacity Act, gives basic tenets relating to mental capacity. The MCA says (and this comes verbatim from the NHS Choices website):

    • Everyone has the right to make his or her own decisions. Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment.
    • Individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand.
    • Just because someone makes what those caring for them consider to be an “unwise” decision, they should not be treated as lacking the capacity to make that decision. Everyone has the right to make their own life choices, where they have the capacity to do so.
    • Where someone is judged not to have the capacity to make a specific decision (following a capacity assessment), that decision can be taken for them, but it must be in their best interests.
    • Treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms possible, while still providing the required treatment and care.

I’ve already provided a description of the rudiments of mental capacity law (and best interests) in my first book on dementia ‘Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).

The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.

And this sentence from the pamphlet is striking, particularly when you consider the annihilation of dementia advocacy services which accompanied the David Cameron Dementia Challenge:

“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”

The law has to be enforceable at all times, and yet the current situation of deprivation of liberty safeguards (DoLS) is not good. The official figures also show an increasing number of DoLS referrals being left unassessed and statutory time-scales being routinely breached; in England, only 43% of the 195,840 DoLS cases referred to local authorities for during 2015-16 were completed during the year, and of those only 29% were completed within the 21-day time limit set in regulations.

I should like to quote a case study from this pamphlet verbatim, under the conditions of the Open Government license, which shows for me how it is so essential to get this right for every individual involved. This concerns the case of London Borough of Hillingdon v Neary (Hillingdon LB v Neary [2011] EWHC 1377 (COP), [2011] 4 All ER 584).

“Stephen Neary was a young man with autism and learning disabilities. He lived at home with his father, with high levels of support services funded by Hillingdon Council. Steven lacked capacity to decide where or with whom he should live. In December 2009, his father reported to social workers that he was having difficulties coping. The local authority arranged for Steven to stay in a residential support unit. However, staff found Steven’s behaviour very challenging, particularly around food, and were concerned about him returning home. His father wanted him to stay for a couple of days but agreed to an extension of a couple of weeks in the expectation that Steven would then return home. In fact, the local authority kept Steven at the facility for a year, including a period when he was subject to the DoLS regime. The Court of Protection held that Steven had been unlawfully detained and ordered that he must return home to live with his father. The court noted, in particular, that the local authority did not properly discuss its concerns or its plans with Steven’s father, and that Steven expressed a desire to return home. The decision-making processes of the local authority were criticised by the court.”

As it stands, the DoLS are contained in schedules A1 and 1A to the Mental Capacity Act, added by the Mental Health Act 2007.  The DoLS aim to ensure that adults who lack capacity to consent to being accommodated in a hospital or care home for the purpose of being given care and treatment are only deprived of liberty if it is considered to be in their best interests. In simple terms, the DoLS do this by establishing an administrative process for authorising a deprivation of liberty and a means to challenge any such deprivation. The DoLS apply to all hospitals (including general hospitals and psychiatric hospitals) and care homes (including private care homes). They do not extend to deprivations of liberty in supported living, shared lives, and private and domestic settings. The DoLS provide that a hospital or care home (referred to in the legislation as the “managing authority”) must apply to the “supervisory body” for authorisation of a deprivation of liberty on their premises.

There are other problems, other than the sheer volume of cases. Many feel the DoLS exhibit a strange disconnect with the Mental Capacity Act: the Law Commission comment, “the DoLS are seen as incompatible with the style and empowering ethos of the Mental Capacity Act, to which they are attached. The two are often regarded as separate legislation with different legal and philosophical histories“.

There are a number of key recommendations made in the pamphlet, and these are worth noting as they will apply to some people living with dementia:

    • The DoLS should be replaced as a matter of pressing urgency.
    • The Liberty Protection Safeguards should be accompanied by the publication of a new Code of Practice which covers all aspects of the Mental Capacity Act.
    • The Liberty Protection Safeguards should enable the authorisation of arrangements which are proposed (up to 28 days in advance), or are in place, to enable the care or treatment of a person which would give rise to a deprivation of that person’s liberty.

It is worth noting that this will still have to contend with international law, and at the time of me writing this the UK government has no intention of withdrawing from the European Convention of Human Rights (ECHR) despite the imminent triggering of Article 50, commencing the official Brexit process.

In Convention law, a major instrument governing human right, Article 5(1) of the ECHR provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law and is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”). Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful. In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.

But this is not the only Convention right at play. Article 8(1) provides that “everyone has the right to respect for his private and family life, his home and his correspondence”. The right is qualified, and State interferences with the various aspects of the right are permitted where they are in accordance with the law and necessary in a democratic society in the interests of, for example, the protection of health. This is yet another example of where ‘dementia rights’ do not exist in a vacuum, and while placard waving for marketing purposes has a function, it cannot possibly convey the real issues in the actual activation of rights comprising realpolitik.

I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights. It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’). This is the practical heart of the issue, For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”. This was a conjoined appeal of two cases, P v Cheshire West and Chester Council and P and Q v Surrey County Council. I refer to this case in detail in my second book on dementia, published by Jessica Kingsley Publishers, “Living better with dementia: good practice and innovation for the future”.

Lady Hale, giving the leading judgment, held that human rights are the same for everyone: If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. Indeed, many have been critical of the Supreme Court judgment in Cheshire West and
argued that it was wrong as a matter of law. I think the power of this controversial judgment, however, cannot be understated in the context of campaigning for ‘dementia rights’. In particular, the judgment undoubtedly “pushes to centre-stage the
understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners.

Unfortunately, a recent draft of the new Welsh dementia strategy referred to the UN Convention on the Rights of the Child (see e.g. p.15), for reasons best known to them. However, the critical piece of legislation for anyone who has been following this for the last few years, pursuant to the excellent campaigning work of Prof Peter Mittler CBE and Kate Swaffer CEO of Dementia Alliance International is the  UN Convention on the Rights of Persons with Disabilities, which was ratified by the United Kingdom in 2009.

This Convention’s purpose (UNCRPD) is to protect the rights of people who have long-term physical, mental, intellectual, or sensory impairments. Whilst not directly incorporated into our domestic law, it is applied both by the Strasbourg and domesticcourts as an aid to interpretation of the ECHR, including by Lady Hale in Cheshire West. The legal instrument is in my view pivotal in the analysis of Deprivation of Liberty Safeguards, and, if properly applied, could be a powerful legal weapon for people living beyond a diagnosis of dementia. However, its operation in England and Wales is affected by the decimation of law centres which came roughly at the same time as the David Cameron Dementia Challenge, and, while it is fantastic that social enterprises are now maximising value through the advocacy of rights, it is surely not to be forgotten that the stripping away of legal protection of people with dementia and carers has been a very real crisis following the Legal Aid and Sentencing and Punishment of Offenders Act (2012). The swingeing cuts to social care allied mental health professionals and others have been exasperating in contradistinction to the slick social media marketing of ‘I’m alright with rights’.

There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales. Interpretation of these articles must take into account the parlous state of support legal advocacy systems for people with dementia and care partners. This might depend, in part, on recent legislation from the Care Act (2014) (see SCIE link).

The first is Article 14.

The guidelines on article 14 of the Convention on the Rights of Persons with Disabilities concerning the right to liberty and security of persons with disabilities state:

“6. There are still practices in which States parties allow for the deprivation of liberty on the grounds of actual or perceived impairment. In this regard the Committee has established that article 14 does not permit any exceptions whereby persons may be detained on the grounds of their actual or perceived impairment. However, legislation of several States parties, including mental health laws, still provide instances in which persons may be detained on the grounds of their actual or perceived impairment, provided there are other reasons for their detention, including that they are deemed dangerous to themselves or others. This practice is incompatible with article 14; it is discriminatory in nature and amounts to arbitrary deprivation of liberty.”

The second Article worthy of note is Article 12.

Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity. Legal capacity is not actually defined in the Convention and interjurisdictional legal differences will exist, but it can be understood as the construct which gives our decisions and transactions legal significance, how we give effect to our preferences and choices in the real world. The significance of Article 12 lays in its demand that disabled people, including must enjoy legal capacity on an equal basis with others. Article 12 of the CRPD requires ‘equal recognition before the law’ for disabled people and Article 12(2) demands that State Parties recognise that disabled people ‘enjoy legal capacity on an equal basis with others in all areas of life’.

The key to this as indeed the Law Commission discusses is the notion of ‘supported decision-making”: viz,

“The main impetus for supported decision-making schemes has been the UN Convention on the Rights of Persons with Disabilities. In particular, Article 12 (the right of disabled people to enjoy legal capacity on an equal basis with others) has been interpreted by the UN Committee on the Rights of Persons with Disabilities as indicating that national laws should provide support to people with disabilities to ensure that their will and preferences are respected, rather than overruled by action which is considered to be in the person’s objective best interests.”

A danger, some argue, is that Article 12’s wording may permit the continuation of guardianship-style systems based on substituted decision-making, and the continuation of substituted decision-making models could potentially undermine the transformative potential of the entire Convention.

So the Law Commission fudge it a bit:

“We share the aim of ensuring that the person is supported so as to be able to exercise their legal capacity, including through making their own decisions, although, as noted above, we consider that there are some situations in which it may nonetheless be necessary and proper to overrule the ascertainable wishes and feelings of a person lacking the mental capacity to make a particular decision or decisions.”

This is very different from the soothing image of people holding up placards.

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The upshot is that member states must provide the resources and infrastructure necessary to develop models of supported decision-making. If indeed the disability rights community can encourage State Parties to interpret Article 12 in a manner consistent with the aims of the CRPD then it has the potential to deliver real improvements for the lives of disabled people. Ideally, the Dementia Alliance International with the support of their partner organisation Alzheimer’s Disease International, in synergistic strategic alliance with the International Disability Alliance, can pool resources and competences with shared aims.

As the Law Commission note, precisely what the CRPD requires in relation to laws that deal with mental incapacity is still not entirely clear. They claim rather contentiously that there has even been some debate as to whether the Committee on the Rights of the Persons with Disabilities (the UN body which monitors implementation of the CRPD by States Parties) has sought to impose obligations that are not contained in the CRPD itself.

The Law Commission in summary propose the following to outline the potential incompatibility with Article 14 and with Article 5(1) ECHR.

“(1) The Liberty Protection Safeguards are unlikely to comply with Article 14 of the CRPD as interpreted by the UN Committee, which contends that any deprivation of liberty on the basis of a person’s actual or perceived impairment (even where there are other reasons, including their risk to themselves) amounts to unlawful deprivation of liberty.24 However, and as noted in the consultation paper, it is not on its face possible to comply with both Article 5(1)(e) of the ECHR and this interpretation of Article 14 of the CRPD. Moreover, we note that the underlying right to liberty contained in the International Covenant on Civil and Political Rights (which the CRPD is intended to ensure is enjoyed equally by all, regardless of disability) is interpreted in a manner much closer to Article 5(1)(e) by the UNHuman Rights Committee.
(2) Within the limits of our terms of reference, we have sought to draft legislation that is in the spirit of the CRPD. In particular, we have sought to ensure that wishes and feelings are given a particular weight in best interests decision-making by our recommended amendments to section 4 of the Mental Capacity Act. We havealso provided for a regulation-making power enabling  a supported decision-making scheme to be implemented.”

The take home message is that it now looks as if the Dementia Alliance International, with their advisor Prof Peter Mittler CBE, were right all along in emphasising the importance of the UNCRPD. I would go a step further in arguing that the UNCRPD holds the key for lobbying of national governments to ‘up their game’ on national dementia advocacy services, far beyond the rhetoric of ‘dementia friendly communities’ and the ‘marketing of rights’.

 

@dr_shibley

 

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International solidarity needs to override domestic advantage-seeking to promote rights in dementia

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Dementia, legally, domestically and internationally, is a disability. There’s no escaping that simple fact.

Increasingly, I have become very worried about the bastardisation of rights for marketing purposes, losing sight of the real essence of what rights are (or indeed their jurisprudence basis, which is admittedly only a small part of debate).

Dementia friendly communities, although ill articulated (there are over a hundred different types of dementia, and the relationship between the community and the State has not progressed much with the evolution of the concept), are necessary but insufficient as a meaningful contribution globally. They are perfect for branding purposes of charity, including their ambassadors, but the level of discussion needs to be substantially more sophisticated.

The concept of dementia friends and dementia friendly communities was important because it seemed to mark a fundamental shift from a focus on meeting the physical and health needs of the person with dementia to an approach that recognises the need to support the person to achieve the best quality of life possible. But I believe this was fundamentally to misunderstand one crucial aspect: that mental and physical health are a crucial part of wellbeing. Put another way, you are unlikely to be able to participate in community and civic life if you are too depressed or immobile to go out.

There are two very different underlying objectives of dementia friendly communities which have as their end goal a better life for people with dementia. First, the objective of reducing stigma and understanding of dementia by greater awareness and meaningful engagement for persons with dementia of all ages – that is the lived experience approach. There is, unfortunately, a tendency for a ‘celebrity’ approach to the ‘lived experiences’, rather than collating the experiences, views or opinions, or back stories, of people with dementia even if at first they don’t appear ‘particularly sexy’ (or marketable). Second, the objective of empowering people with dementia in their own communities by recognising their rights and capabilities so that they feel respected empowered to take decisions about their lives – the rights approach.

However, I feel that the approach provided by the United Nations CRPD (Convention on rights for people with dementia) is entirely relevant here too. The CRPD sets the stage for a confrontation with the assumption that a disability may unduly justify coercive measures in the form of coercive detention  or as use of force. We saw this in care homes where people with dementia were being physically handcuffed to their chairs to prevent them from going anywhere. It is now incredible to believe that this was deemed possible, although it became institutionally acceptable for people to use the chemical cosh of antipsychotics inappropriately, sometimes, to have the same effect.

The CRPD instead requires that the individual’s self-determination and integrity remain paramount. Under the CRPD, member states have committed itself to raising awareness about persons with disabilities and respect for their rights. The initial failure of the World Dementia Council to have many people living with dementia was a spectacular example of offending this. Generally, persons with disabilities encounter prejudices that can affect whether they can obtain a job or make them feel that they are being discriminated against. The CRPD, rather, emphasises that persons with disabilities have equal rights to participate in political and public life, that is, to take an active part in the governance of Denmark. Even now, the World Dementia Council represents the views and needs of people without dementia already with power and influence, and vested interests, rather than the needs of people living with dementia or care partners globally.

Secondly, the right to live independently and to be included in society are protected by the CRPD. The Convention therefore obliges states to make efforts so that all persons with disabilities can choose their place of residence and not be compelled to live in institutions or institution-like accommodations. The UK and other countries, including low and middle-income countries, have been slow to join up approaches in health and housing, essential for dementia policy. This is going beyond the approach of the celebrity-driven dementia friendly community.

Thirdly, the CRPD furthermore requires that persons with disabilities should have equal access to health care. This I believe is incredibly important, yet many general practitioners and other specialists work in clinics that are not accessible to persons with disabilities, thus preventing persons with certain disabilities from being able to use their local doctor. The same applies to pharmacies and other places that are important for access to healthcare.

BRIDGE CRPD-SDG
The BRIDGE CRPD-SDG was devised to respond to increasing demands for trainings on the implementation of the CRPD and inclusive development, and how these link to achieving Agenda 2030 and the SDGs. It is a coordinated training investment, drawing from the resources and experiences of the IDA and IDDC networks and their members. I feel BRIDGE CRPD-SDG is now essential for dementia to move forward in a strong geopolitical context, away from domestic power games of people gaming the system domestically.

Discrimination of persons with disabilities is widespread – BRIDGE CRPD-SDG training results from common observations that despite great achievements to raise awareness about the rights of persons with disabilities through global advocacy, inclusive societies are still far from the reality experienced by persons with disabilities. Advocating for ‘all human rights for all persons with disabilities’ is urgent yet also complex. The CRPD sets high standards and obligations to ensure the effective realisation of all human rights (i.e. covering all sectors and dimensions of life) for all persons with disabilities (acknowledging diversity of gender, age, culture, impairments, ethnic origin, etc.).

Building a critical mass of skilled DPO advocates representing the diversity of constituencies in all regions requires coordinated efforts. The scope of work requires coordination of efforts drawing from different sources of expertise (e.g. in-depth understanding of the CRPD and its enforcement, inclusive facilitation skills, inclusive policies and governance). It requires drawing from the resources of diverse constituencies.

BRIDGE CRPD-SDG provides an important analysis.

  1. Mitigating against a disconnect between human rights and inclusive development, including the need to address concurrently CRPD provisions and policy reform (including through inclusive development and the SDGs) to avoid a disconnect between human rights standards, and the mechanics required to translate them into local realities.
  2. Inclusion of all persons with disabilities needs to be addressed. As it stands today, however, there are many problems with accessibility: persons who use a wheelchair can still not use public buses because the drivers or others are not permitted to run the ramp out to the wheelchair. Public websites are not always accessible to persons with disabilities. Many polling stations are not accessible, entailing that persons with disabilities are unable to vote at their local polling stations. The list could be much longer. People with dementia are not given the tools to perform the best they can, for example using memory aids or adequate housing or signage.

 

Dementia Alliance International and BRIDGE-SDG
I believe that Dementia Alliance International could foster a powerful synergistic strategic alliance with BRIDGE-SDG, and this could be a powerful key for member states to access rights.

BRIDGE CRPD-SDG strives to enact the general principles of the CRPD throughout its training objectives, content, and teaching methods:

By, for and with persons with disabilities. Advocates are needed with the skills required to participate and influence decisions that affect their lives, in line with the motto of the disability movement “nothing about us without all of us” and the objective of full and effective participation. This is indeed the motto of the Dementia Alliance International (see below). The CRPD is based on the recognition that persons with disabilities have the right to self-determination and autonomy, even when they have difficulty understanding complex issues or have difficulty expressing their views. This is going beyond mere tokenistic empowerment and engagement, or an illusion of involvement.

Ensuring and promoting diversity – Attention is paid to ensure the optimum representation of the diversity of the disability movement among participants, including gender balance, and representation of people with different types of impairments.

Participatory methods – BRIDGE CRPD-SDG is based on mobilisation of participants’ knowledge, and is very practical and participatory. It places emphasis on inclusiveness and strives to ensure inclusive facilitation for all groups and participants. Each participant is selected in relation to their experience, knowledge and active contribution to the promotion of rights of persons with disabilities, and they are expected to actively contribute to the content of the training. This is going way beyond selecting people who can market the shared values of domestic organisation with powerful vested interests.

Dementia Alliance International is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . Members seek to represent, support, and educate others living with the disease, and the wider dementia community. Members comprise an organisation that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

@dr_shibley

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“I” or “We” statements for dementia. Are they making the weather?

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As one of the most important aspects of both policy and dementia care (and the two do overlap occasionally), a person is not to be determined solely in identity by the medical label of dementia. Speaking only medically, it is very unusual for someone to live only live with dementia – dementia rarely travels alone. And secondly, each person with dementia is an unique individual, with a present, past and future, identified in their ‘life stories’. Being an impartial independent academic physician, the “I statements” do not really impact upon my work. But they are of much peripheral interest to me, being on my RADAR or on my line of vision, given that I have a good overview of the current landscape of policy and dementia care both for here and internationally.

The National Dementia Declaration ‘I’ Statements are central to the work of the Dementia Action Alliance (DAA). They are the key principles of the DAA, around which all organisations agree to base their action plans. The idea was that the statements would encapsulate what someone with dementia could say about their life if they were properly supported, and that they would provide an ambitious and achievable vision for how society could support people with dementia.

I feel the statements are as broadly relevant now, as they were when originally proposed. It’s worth noting that a few Department of Health policy plans have emerged frequently since 2012, although there has been no revision of the original five year strategy for England since 2009’s “Living well with dementia”, co-authored by Prof Sube Banerjee who indeed wrote the main foreword to my recent book “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” from Jessica Kingsley Publishers (January 2017).

Personalisation and co-production are important areas of policy development for England, and the contribution from Think Local Act Personal in the development of the ‘I statements’ methodology is formidable (see blogpost here).

The original National Dementia Declaration described seven outcomes that people living with dementia and their carers would like to see in their lives. They provide an ambitious and achievable vision of how they are supported by society. Click here to see a timeline of policy for the provision of dementia care in England.

The National Dementia Declaration is based on 7 ‘I Statements’:

  1. I have personal choice and control or influence over decisions about me.
  2. I know that services are designed around me and my needs.
  3. I have support that helps me live my life.
  4. I have the knowledge and know-how to get what I need.
  5. I live in an enabling and supportive environment where I feel valued and understood.
  6. I have a sense of belonging and of being a valued part of family, community and civic life.
  7. I know there is research going on which delivers a better life for me now and hope for the future.

I think it’s excellent that there has been active outreach for the views of individuals beyond a diagnosis of dementia concerning these statements. Some of these ‘focus groups’ have utilised the Toolkit for I Statements guiding direction of this work. An overview of the review of this work is provided here.

For what it’s worth, it is imperative that these statements are drafted and developed by individuals with dementia, but there is a debate to be had, hopefully a constructive one, about the extent to which these statements are owned only by people with dementia. These statements are essentially aspirational rather than legally enforceable, and there is a history of aspirations, e.g. the Citizen’s Charter in a previous government, which have not had much teeth in the real world. The advantage of a rights-based approach is that these can include rights which are enshrined in domestic or International legal instruments, for example the Human Rights Act or the United Nations Convention on Rights for People with Disabilities, but the power in these regulations is arguably not from the ability to take someone to court but an acknowledgement and appreciation that a rights-based consciousness can lead potentially to enforcement. Of course, if the mechanism for enforcing such rights in healthcare settings through the Care Quality Commission were more stringent, there might be more trust in regulatory mechanisms against neglect, abuse and mistreatment, for example.

From a purely policy and dementia care perspective, I feel that it is quite important that these statements don’t simply become a checklist for consumer rights, with the person with dementia or care partner merely seen as a paying consumer of services. I personally felt that ‘knowledge is power’, taking ownership about knowledge and know-how about dementia, is incredibly empowering. Every person has a right to good physical and mental health (and wellbeing is part of general health), so I think we all have a part a play here also in keeping people with dementia out of hospital through appropriate self-care and self management. The danger of implementing this in parallel with swathes of cutbacks to public services (even within the guise of sustainability and transformation plans from NHS England) is that personal health and care commissioning can be seen as a cover for cutting further the NHS and social care and more rampant rationing. This is why I feel more ‘choice and control’ is a weak idea unless proper resourcing of budgets exists, as financial poverty is a significant social determinant of health or inequality.

Likewise, I do believe being a valued part of family and community life is incredibly important, but the danger always for dementia friendly communities is that it has been viewed as a cost-neutral tick-box solution, acting to the commercial advantage of high street brands, rather than securing the local infrastructure in essential services such as specialist nurses. I feel that social connectedness, however, is most important for building up connectedness. I think having ‘services built around me’ can be hitting the target but missing the point; it sounds perfectly plausible that the solution might be a dementia adviser signposting to an ever decreasing range of services, but proper infrastructure necessitates a well funded system of social care professionals, district nurses or clinical specialist nurses who allow for continuity of care, training of the workforce, essential care and support for carers and their emotional wellbeing, and offering expertise in palliative care.

I think the length of the ‘I statements’ is fine, but my final concern is whether these statements would be better served by “We statements” in part. For example, collectively, it is motherhood and apple pie to ‘hold out hope’ for more research, but one person living beyond a diagnosis of dementia might prefer more research in better quality of care now rather than the potential for a distant (or more likely failed) cure by the deadline of eight years’ time in 2025. The views of people with dementia collectively are not the same as those of care partners, and indeed might vary significantly in certain areas. One example is non-invasive GPS monitoring of location; this might improve the wellbeing of a care partner and provide better security and safety arguably, but might be seen as an unacceptable invasion of privacy by a person with dementia. This is all to do with the juris sprudence of rights – that the rights of persons with dementia might be complementary to but not the same as those of care partners. We know the needs of people with dementia vary as the biology of the dementia changes, but it is worth noting that the needs of all of us, affected by dementia or not, is changing.

It is worth noting that it is simply impossible and unfeasible to ignore the care partner. Despite a direct duty of care of clinicians to people with dementia, care partners have a crucial role to play in maintaining the health, wellbeing and resilience in people with dementia, in various ways. These could be codified through care planning or case management (see the excellent work of Admiral nurses from Dementia UK), or through unofficial means (professional emotional building which defies metrics and commissioning). The care partner can be instrumental in the timing of a person seeking a diagnosis of dementia in the first place, can  be instrumental in ascertaining when a person with dementia no longer meets the three tests of the mental capacity legislation, or if a person with dementia is unable to live adequately at home and might benefit from a transfer to residential care. The care partner can be instrumental in communication of essential needs,  met and unmet, for both care partners and people with dementia.  So do we really mean “I statements” for only people with a diagnosis of dementia? I believe personalisation is not the same as personhood, although there are similarities. Respecting personhood for me, I hope in the tradition of many others more learned and eminent than me, is to respect the person in the context of his or her environment, and respecting aspects of identity such as sexuality or spirituality. And we need to know how people with dementia can flourish or thrive in the company of others. That’s why “I” doesn’t really mean “I”  but the person living a full life with others – look at Brooker and Latham (2016) on person-centred care. That’s at the heart of why I feel that independence is one side of a coin – the other side of the coin is interdependence.

Independence and interdependence, indeed, comprised a key theme of my book on integrated care noted above.

umbrella

A possible solution then might be to make ‘I statements’ generically intended for anyone ‘affected by dementia’, including a person with dementia or care partner alike. But not even the largest focus group will be able to obtain a list of definitive statements upon which all agree; this reflects the pay-off that often has to be achieved between achieving equality and diversity. And thought diversity is not only to be expected, but to be positively encouraged, arguably in people with dementia and care partners to maximise opportunities for the future and to build up resilience generally.

But I strongly agree with the methodology and the purpose of the “I statements”, and the mere process of engagement and empowerment of people living with dementia and care partners itself is a potentially beneficial one, irrespective of whether the statements indeed have any force. They certainly give some structure to policy aims, but for me it could be a case of the tail wagging the dog as most of the policy climate is there in the global literature and the ‘I statements’ merely are sampling the weather? The crunch question is whether the statements most benefit the person with dementia, the carer, the hosting organisation or none of the above?

Or is it that the ‘I statements’ are making the weather? Whatever, the Alzheimer’s Society and Dementia Action Alliance must be congratulated for an outstanding contribution to dementia, for this.

 

@dr_shibley

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Are we “all right” with rights in dementia? Is ‘doing rights’ sufficient?

Untitled-4

 

On 24 November 2015, long before the bandwagon left the station, I published my blogpost, “Rights-based approaches – what are they good for?”  The modern day equivalent in these days of social media, of chaining yourself to railings, is probably to come up with a catchy meme to reinforce the idea that human rights apply to people with dementia and care partners too. I, of course, use the word ‘bandwagon’ flippantly here – there is no doubt in my mind that none of this would have got the momentum it deserved if it were not for Kate Swaffer and Prof Peter Mittler CBE, a giant in the learning disability academic world, both living beyond a diagnosis of dementia. I should add that the work from Scotland and Ireland on rights-based approaches too have been phenomenal, far predating any work of mine.

For most of this weekend, I had the pleasure of listening to old lectures of the late Prof. Ronald Dworkin, the eminent jurisprudence professor of University College of London. Dworkin would simply take to the microphone, and speak without notes with immaculate detail, on the highly sophisticated details of the law. This reminded me to think about how the marketing of rights in dementia currently runs the risk of producing quite a bland meaningless campaign, a Skoda compared to the Jaguar of Dworkin and the Rolls Royce of HLA Hart at the University of Oxford (who awarded Dworkin a congratulatory first). It is my contention that people with dementia who are very vocally ‘doing rights’ have various degrees of understanding of these rights. I think this poses problems for whether the use of rights is to be of substance, and a meaningful debate about rights is now necessary.

Rights are essentially a matter of conviction. This has led Dworkin, and many of his contemporaries, to think about how they are to be best interpreted. Years before the EU Referendum in 2016 (Dworkin died in 2013), Dworkin used to discuss at great length about the ‘tyranny of the majority’, and whether it could be possible that all legal judgments could possibly have an objective understanding. When you think about how many varied reasons people give for voting ‘in’ or ‘out’ of the European Union, Dworkin’s words seem to me uniquely prescient. But Dworkin deserves credit for bringing legal philosophy within reaching distance of political philosophy for me, even if his ultimate claim that hard complex law have unique solutions (with people having varying degrees of success in finding these solutions) seems a bit far-fetched even from his ivory towers viewing bay. For all of us, law is a matter of interpretation. Dworkin objected to a narrative of law where the moral or political intention was ignored, such that it was reduced only to internal consistent rules made by a supreme power.

That law is a matter of interpretation with a geopolitical context is a critical move away from simply following a rule book, and conceding that a supreme power has an ability to judge whether someone’s behaviour has erred to an extent to merit a sanction. For someone to be ‘all right with rights’ posits an individualistic approach to human rights, and indeed all humans are deserving of universal, inalienable rights. What may seem to someone to be ‘alright with rights’ may mean someone else is ‘not alright with rights’. We know that care partners often have varying, different needs to individuals beyond a diagnosis of dementia. The justification of rights can only be seen in their appropriate context. For example, a person with dementia might be ‘alright’ with his right to privacy, but it is worth noting the particular power the right of this person with dementia might have over the State.

For Dworkin, these rights act as ‘trumps’ – and crucially can override the sum utility of the needs of the rest of society. They are thus anti-utilitarian. Rights are preferences which are given special weight. Dworkin employs this central idea in his essay “Taking Rights Seriously”:

“A right may be regarded as a trump, moreover, even though it might not trump the general good in cases of emergency: when the competing interests are grave and urgent, as they might be when large numbers of lives or the survival of a state is in question. Then, we might say, the trump gets trumped not by an ordinary justification but by a higher trump.” [Justice for Hedgehogs (Cambridge: Harvard University Press, 2011), 473].

The problem this poses for law makers including regulators is obvious. The law is ultimately defined by what is codified at least, and the Care Quality Commission might at one minute decide that covert CCTV surveillance is necessary for all care home residents. There is no right answer. Dworkin might argue that some people might find this morally objectionable, but for Dworkin the relationship between morality and law is crucial, to the extent of wondering whether rights can ever be truly objective. Societal values change. For example, Abraham Lincoln, held by many in high esteem, famously said that he would never sit closer than two places away from a ‘black man’.

Furthermore, we know both from domestic and International jurisprudence that there is conflict of laws. What happens if the rights of the person with dementia conflicts with the rights of the care partner? For all of us, there is an inherent conflict anyway between the rights of liberty and equality, for example. Rex Martin once pointed out that if the conflict in human rights issue is left unresolved, the status of liberal theorist John Rawls’ “basic rights as forming a stable system made up of mutually compatible elements” is uncertain (Martin: Rawls and Rights (1985). Therefore, arguably, no serious human rights theory may ignore that issue. In law, words do matter, which is why it is striking for people to say ‘I am’ rather ‘we are’ alright with rights. This immediately warrants the question of whether a group of people living beyond a diagnosis of dementia are sufficiently homogenous to use ‘rights’ for instruments for specified groups of people (e.g. the United Nations Convention on Rights of Persons with Disabilities).

Latterly, since the time of Cicero at least, groups of different people have upheld their rights to rail against oppression, but rights also are uniquely personal and open to interpretation. Arguably, not to put too fine a point on it, human rights are what makes us all “human”, deserving of dignity. Here dignitas (dignity) refers also to the dignity of human beings as human beings, not dependent on any particular additional status. In this use of dignity, man is contrasted with animals: ‘ … [i]t is vitally necessary for us to remember always how vastly superior is man’s nature to that of cattle and other animals; their only thought is for bodily satisfactions … . Man’s mind, on the contrary, is developed by study and reflection … . From this we may learn that sensual pleasure is wholly unworthy of the dignity of the human race. ’ (Cicero, De Officiis, I , at 30). If you think law is not open to personal interpretation, such as genocide, it is worth noting that different personal views exist on capital punishment and abortion, for example, and the rights therein.

Here, it is worth noting that there is a difference between law and seeking justice. There, arguably comes a time when the degree of injustice, oppression and discrimination reaches a point where fundamental human rights mean just that. The human rights lens reveals issues of discrimination and social exclusion that often underlie abuse against patients. This is critical, since abuses against groups such as people living with HIV, ethnic minorities, sexual and gender minorities, people who use drugs, and people with disabilities are especially rife in health settings. Dementia, sadly, is no exception. It is crucial therefore to help people with dementia and care partners to find meaning in human rights locally. You might feel that it is ‘all right’ for a terrorist suspect to be subjected to torture to save national security, and proportionate to do so, but you might feel fundamentally different about this if that suspect were you.

My own legal background urges me to feel it necessary to ‘proceed with extreme caution’ about the adoption of rights, highly dependent on meaning, and we currently have barely any literature on the cognition of people with dementia in relation to human rights. A real danger is that these rights get bastardised for marketing campaigns for fundraising or commissioning purposes, leaving behind any chance there might have been for a genuine authentic social movement. For me, the ‘turning point’ was Kate Swaffer’s speech at WHO in Geneva as CEO of Dementia Alliance International (link here).

The first principle of the 2003 UN Common Understanding (on a Human Rights-Based Approach to Development Co-operation) states that ‘All programmes of development co-operation, policies and technical assistance should further the realisation of human rights as laid down in the Universal Declaration of Human Rights and other international human rights instruments’.

The key word here is realisation – not just giving someone a pamphlet, a meme and a bandwagon.

I believe that it’s not simply “alright” to be seen to ‘do rights’.

 

 

@dr_shibley

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Do “the right people” enable change in dementia care?

brand

Whist it is pretty much universally accepted that funding has not kept up with demand in the NHS, yesterday’s capital cash injection for ‘successful pioneers’ for the sustainability and transformation plans was better than nothing, arguably.

My biggest concern for these plans is that they are being set up to fail, if they are not given sufficient financial resources. But I’ve always felt that they should be given a chance to work if two conditions are met. Firstly, that they are not driven by very short time horizons financially (the cost of initial investment initially is high nearly always). Secondly, they should be driven by arguments for better care from practitioners and professionals.

The Alzheimer’s Society is currently running a campaign called ‘Fix Dementia Care’ but it is not entirely clear to me how they intend to fix it.

They indeed call for three things:

1. All hospitals to publish an annual statement of dementia care.

2. Monitor and use the annual dementia statement as part of its Risk Assessment Framework to identify and take action in hospitals where dementia care is inadequate.

3. Care Quality Commission (CQC) to appoint a specialist dementia adviser and include dementia care indicators as part of its Intelligent Monitoring work to improve regulation of dementia services in hospital.

It is hard sometimes for me not to be deeply cynical about the nature of involvement of well meaning people in dementia policy. Around the inception of the Big Society, there was an aim that the third sector would ‘build up the capacity’ of services. Unfortunately, this coincided with austerity-driven cutbacks in public services, so the forging ahead of dementia friendly communities and friendly banking came with drastic cuts to day centres and domiciliary care on its knees.

The “Fix Dementia Care” solution could’ve been written by anyone without a background in dementia, which is what alarms me the most.

For me, it is not simply good enough to heckle loudly from the sidelines and think this is ‘job done’. Big Charity does a nice form of heckling, in that they are highly respected and influential, and very chummy to government. The same people sitting on the same boards, just with different names, running the same conferences, with the same speakers, and the same delegates. And their branding is expensive and nice.

But this is not to address the root of the problem for me. And it won’t in a million years produce ‘meaningful change’, akin to the “million chimpanzees argument”.

I accept the argument that is insufficient simply to ask for more money. However, having witnessed with my own eyes skeleton staff being asked to man hospitals in the name of ‘efficiency savings’, I do have to question the lack of questioning of stripping public services of adequate funding.

Secondly, it relates to the issue that weighing a pig every day does not make the pig fatter. I do not see how such a disproportionate emphasis on regulation, rather than performance management, is meant to be the panacea for dementia care.

It does not address also the need to see what models of care work – for example an important part of wellbeing is to improve the physical and mental health of people with dementia. But this will not always be appropriately through an acute hospital admission, especially if the habitual residence of a person living beyond a diagnosis of dementia is in a care home.

I think ‘speaking truth to power’ no longer is a case where we can reliably expect corporate-like charities to “tell the truth” about the state of the NHS and social care to our current Government. It’s well known that the money to be given to social care for three years, from yesterday’s budget, should have been given as a front-load for next year in itself.

“Speaking truth to power” has become a much underrated trait in these difficult times for dementia practitioners and professionals. There seems to be a somewhat corporate obsession to change, with well meaning people not having the slightest clue about what they’re changing from or to.

All of this is a long distance from the ‘real leaders’ and change catalysts in the NHS being ‘rebels and mavericks’, not people with PRINCE2 diplomas. The fact is that people running change in the main ARE the people with marketing ‘experience’ and PRINCE2 diplomas, and they’re doing the rest of us a massive disservice.  Sadly, the people with the most power tend to be the people with the most influence, even if, for dementia care, they are completely wrong.

I really do wonder whether the ‘right people’ are leading change – whether co-production is a social movement, in the civil rights sense, or just clever marketing producing an ‘offer’? This concerns me most about the brand of ‘dementia friendly communities’.

But I think we have to be brave, and cut our losses. We need to tell corporate-like charity that dementia care won’t be solved by professional brand ambassadors and expensive marketing, and successful e-petitions, but needs substantially more serious professional investment, for example in continuous professional development. Or else ‘policy’ becomes a sub-division of ‘marketing’.

Dementia is not a brand. Get over it.

 

@dr_shibley

 

 

 

 

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The right to health in dementia care needs prioritisation of rehabilitation

Since 1946, the right to health has been recognised as a fundamental human right in legal instruments and national constitutions, creating entitlements in relation to accessible and adequate health care and the underlying social determinants of health.

When a person with dementia is physically restrained causing bruises to appear, article 3 gets engaged, to be free from degrading treatment. Therefore, quality in care rights converge on dignity rights, and in turn human rights.

Jennifer Gibson and colleagues note that:

“Although dignity is commonly referenced in international human rights instruments, the term is neither conceptualized nor explicitly translated into specific rights, including health.”

I mention dignity in the final chapter of my last book on dementia “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” from Jessica Kingsley Publishers.

But arguably, any international consensus on the human right needs to take due account of domestic circumstances. For example, Joanna Erdman has advanced the view that “both bioethics and human rights approaches to the right to health must necessarily be attentive to lived experience, institutional culture, and structural injustice.”

The drive to embolden an international “right to health” comes at a particularly sensitive time.

For example, Gostin and Friedman (2017) write in the Lancet:

“To create the foundation for these transformative changes, the Director-General will need to focus first on gaining political support. This entails improving accountability and transparency to gain member state trust, and enabling meaningful civil society participation in WHO’s governance and standing up for the right to health to gain civil society support. Ultimately, in the face of a global environment marked by heightened nationalism and xenophobia, member states must empower the next Director-General to enable WHO to be a bulwark for health and human rights, serving as an inspiring contra-example to today’s destructive politics, demonstrating that the community of nations are indeed stronger together.”

The UK as a whole voted #Brexit in 2016, to leave the European Union (EU), although it is worth noting that Scotland, with a strong human rights record in dementia policy, voted for staying in the EU. The UK Government, although not explicitly stating it in law, re-confirmed yesterday its current view of wishing to retain membership of the European Convention of Human Rights. This is highly relevant, as citizens of the EU can still petition Strasbourg on human rights, irrespective of whether the Human Rights Act 1999 becomes latterly repealed or not.

A pivotal change in perspective has been to acknowledge dementia as a disability. This is defined under the Equality Act (2010), and strongly conveyed in the drafting of the United Nations Convention on the Rights of Persons with Disabilities. Instead of putting all one’s eggs in one basket, vis-à-vis a “cure for dementia” by 2025, an aspirational and yet completely unenforceable claim, people currently with dementia can be offered active rehabilitation and be entitled legally to adjustments to make their lives better.

The World Health Organisation met earlier this week to launch their Global Action Plan on rehabilitation (“#Rehabilitation2030“).

As they stated,

“Rehabilitation is a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment.”

Rehabilitation is a highly person-centred health strategy; treatment caters to the underlying health condition(s) as well as goals and preferences of the user.

The WHO Framework on Integrated People-centred Care is relevant here.

I feel very much this approach is needed to tackle the needs of people with dementia and care partners, bearing in mind especially the ‘complexity’ and ‘comorbidity’ which I identified as pervasive strands early on in my book.

This WHO framework provides:

“Longer lifespans and the growing burden of chronic conditions requiring complex interventions over many years are also changing the demands on health systems. Integrated people-centred health services means putting the needs of people and communities, not diseases, at the centre of health systems, and empowering people to take charge of their own health.”

Rehabilitation responds to individuals’ needs and priorities, and targets limitations in functioning of a person in relation to his environement: this is the very essence of person-centredness.

The progress of England towards integrated care has been troubled in recent years, ranging from the positivity of the Barker Commission to the problems identified in the NAO report yesterday, but countries on the whole are indeed moving towards integrated person-centred care, and it is thus imperative that quality rehabilitation is embedded in service delivery models.

In the WHO meeting earlier this week, it is discussed that, excluding acute and remitting conditions, and conditions associated with mild disability, 74% of years lived with disability (YLDs) in the world are the result of health conditions for which rehabilitation may be beneficial. But now that YLDs to compare different disabilities, despite the clear methodological (and definitional) concerns, it seems only reasonable that greater scrutiny goes into the ‘meaning’ of YLD in dementia.

YLDs

As such, the availability of accessible and affordable rehabilitation plays a fundamental role in achieving Sustainable Development Goal (SDG) 3, “Ensure healthy lives and promote well-being for all at all ages”. Rehabilitation is an essential part of the continuum of care, along with prevention, promotion, treatment and palliation, and should therefore be considered an essential component of integrated health services. In other words, rehabilitation is important for all components of the integrated care pathway I discussed in my new book.

The benefits of rehabilitation are realised beyond the health sector. Rehabilitation can reduce care costs and enable participation in education and gainful employment. This is of interest to, but not confined to, individuals who have an onset of dementia in younger ages. It is highly relevant to participation of people with dementia and care partners in accessible, inclusive ‘dementia-friendly’ communities or societies.

Rehabilitation may be needed by anyone with a health condition who experiences some form of limitation in functioning, such as in mobility, vision or cognition. Rehabilitation is characterised by interventions that address impairments, activity limitations and participation restrictions, as well as personal and environmental factors (including technology) that have an impact on functioning.

It is noteworthy that the World Health Organisation recommends that, in order to be compliant with the Convention on the Rights of Persons with Disabilities, Member States should ensure that rehabilitation services are accessible to persons with disabilities. The UK currently has a dreadful ‘record sheet’ with the United Nations on disability, so the way in which the UK governments treats people with dementia and carers under this lens is of particular interest. This may involve modifying the physical environment where services are provided, or making rehabilitation information accessible in different formats. The emphasis of ‘dementia friendly communities’ will therefore have to change from the competitive advantage of businesses to a greater involvement with the health nd social care parts of society. For older populations, rehabilitation has been shown to increase safety and independence, reduce the risk of falling, and decrease hospital and nursing home admissions. Given the current serious problems in the NHS and social care, this is of huge importance in ensuring that the quality of life of people with dementia and carers are not actively impaired by their involvement with the health and social care systems.

Rehabilitation has long been recognised as a core component of Primary Health Care since the Alma Ata Declaration in 1978, yet its representation in primary care is relatively poor. Although there is no universally agreed or recommended minimal number of physiotherapists, physical and rehabilitation medicine doctors, or speech and language therapists, the critical shortage of these professionals is evident, especially in low- and middle-income countries. I have long argued the need to embrace diverse members  of the allied health professional community, for example speech and language therapists in managing the complex language disorders which can accompany dementia, or advising difficulties in eating well or swallowing.

Current barriers to strengthen and extend rehabilitation in countries, identified by WHO in their “Call to Action”, include:

i. under-prioritisation by government amongst competing priorities;
ii. absence of rehabilitation policies and planning at the national and sub-national levels;
iii. where both ministries of health and social affairs are involved in rehabilitation there is limited coordination between them;
iv. non-existent or inadequate funding;
v. a dearth of evidence of met and unmet rehabilitation needs;
vi. insufficient numbers and skills of rehabilitation professionals;
vii. absence of rehabilitation facilities and equipment; and
viii. the lack of integration into health systems.

A critical thing to remember is that rehabilitation is relevant in all care settings, including at home, in hospitals, hospices or residential homes, and promotes a right to health. All these factors would all have to be put into the melting point of a renewed English dementia strategy, if we had one. The only English dementia strategy to date was 2009-2014. As it is, one can only hope that with the excellent ‘engagement and empowerment’ being done by Kate Swaffer and the Dementia Alliance International working with Alzheimer’s Disease International, directly with the World Health Organisation, England might somehow ‘catch a cold’ policy-wise.

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Physical health, diversity and disability rights must be critical components of dementia friendly communities

Simon

 

At one level, it is essential to know in detail about the experiences of people with dementia and carers of their NHS and social care services. The reality is that local commissioning decisions might mean a shortage of day centres or Admiral nurses, while the brilliant work, which I fully support, in dementia friendly communities continue.

I feel ‘dementia friendly communities’ have been a great successful initiative from the Alzheimer’s Society in levelling against the stigma which surrounds dementia, and to re-engaging a level of community activism for dementia in keeping with what might have transpired in the Big Society. It is noteworthy however what the policy priorities of ‘dementia friendly communities’ (DFC) have been, and whether they can be reconciled easily with a record number of delayed discharges from hospital or 30 hour waits on hospital trolleys in the medical admissions unit for example.

Existing DFC domains, defined by Alzheimer’s Disease International, within the constructs of WHO’s Age Friendly Cities principles and tactics, include: public awareness and information access, planning processes, the physical environment, access and consideration for dementia among local businesses and public services, community-based innovation services through local action, and access to transportation.

I do not want to consolidate the viewpoint that the world of a person with dementia and carer should be solely restricted to the health and social care systems, when the whole point of dementia friendly communities is that people with dementia can lead fulfilling lives in communities. But it is palpably clear that dementia friendly   communities, to seek to preserve the safety and wellbeing of those living with dementia, “it should also empower all members of the community to celebrate the capabilities of persons with dementia, and view them as valuable and vital members of the towns, cities, villages and countries in which they reside.”

But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities. There’s also the issue of inadequately acknowledging the capabilities of persons with dementia.

An excellent starting point are the original data cited in “Building dementia-friendly communities: A priority for everyone, Executive summary August 2013” from the Alzheimer’s Society. While people with dementia face barriers to engaging with their community, it is argued that it is possible to make changes that can make their day-to-day lives much better. It is clearly stated that “people face psychological and emotional barriers to being able to do more in their community, alongside physical issues” it is my contention that in England, with the NHS and social care systems on their knees, people living with dementia are severely handicapped from poorly developed person-centred integrated services.

One of the most common barriers are mobility issues (59%) and physical health issues (59%). And it is further described that, to help support them to live well in their local area, 10% people with dementia and their carers “wanted improved health – related either to their dementia or another condition”. Dementia is a condition which very rarely travels alone. A person is unlikely to live solely with dementia, but also with a number of other conditions. The hallmark of dementia is its complexity, and this will inevitably be reflected in a response from ‘dementia friendly communities’.

In both domestic and international policy, it is wholly laudable that, for example, “community-based solutions support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes”, but with inadequate attention, say, to care planning (including advance care planning) or ambulatory case-sensitive conditions, there is a serious danger that the rhetoric outpaces the reality, and people with dementia go in and out of acute care in an avoidable way.

In the learning disability field, it is a priority to acknowledge that children and adults with profound and multiple learning disabilities are, like everyone else, unique individuals, but sometimes it is tempting or even helpful to talk about groups of people who have common concerns. This can help us as a society to form a response to make sure that people’s human rights in certain communities are upheld.
 However, it is vital that we understand the distinctive needs of people who are often excluded from society, and, totally irrespective of the medical argument for the different causes of dementia, no one person with dementia is the same as another. It is only by focusing on their needs and rights, and working to remove the barriers they face, that people with cognitive disabilities will achieve their rightful place in society.

My first supervisor in Cambridge was Prof Simon Baron-Cohen. Baron-Cohen once commented that: “The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points. Stigmatising anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.” Neurodiversity is defined as ‘the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species’.

And I feel embracing “differentness” is important. This does not make people with dementia ‘inferior’ in any way – just celebrating ‘uniqueness’, which we should like to do all of our fellow citizens. It is really hard to achieve this, arguably, through the broad-brush approach of macro policy of DFCs.

As Prof David Mitchell writes: “I recognize, however, that much of the diversity among individuals reflects the fact that human beings are unique in their individual learning styles, motivation, interests and experiences. I affirm that, irrespective of such diversity, all individuals can and do learn and are capable of having that learning extended and enriched by education. I recognize that all children have a right to receive a quality education appropriate to their needs.”

Recognising diversity does not mean turning a blind eye to either cognitive or physical disability in people with dementia, or poor mental health. Indeed, cascading the overall tenets of the United Nationals Convention on Rights of Persons with Dementia to local jurisdictions (“think global act local”) has become rightly fundamental.

But channelling DFCs through the ‘happy shopper’ prism, perfectly understandable through the ideological drive to ‘nudge’ or behavioural insights in the last UK government, causes a fixation problem, where measuring the outcome of dementia friendliness might come through measuring customer satisfaction of people with dementia with high street brands, rather than measuring the impact of dementia friendly communities on improving wellbeing. And yet this was a prominent aspect of the previous UK government in ‘measuring happiness’ (see, for example, this article from the Guardian in 2010).

Here the “capability approach”, first articulated by the Indian economist and philosopher Prof Amartya Sen in the 1980s is particularly noteworthy, employed in the context of human development, for example, by the United Nations Development Programme, as a broader, deeper alternative to narrowly economic metrics such as growth in GDP per capita.

The capability approach attempts to address various concerns that Sen had about contemporary approaches to the evaluation of well-being, including that individuals can differ greatly in their abilities to convert the same resources into valuable functionings (‘beings’ and ‘doings’). Particularly intriguing, one of Sen’s proposals, is that “people can internalise the harshness of their circumstances so that they do not desire what they can never expect to achieve. This is the phenomenon of ‘adaptive preferences’ in which people who are objectively very sick may, for example, still declare, and believe, that their health is fine.”

If one is a proponent of the ‘small state’, it is easy to argue that people with dementia and carers might be encouraged to overestimate their degree and extent of coping with poor health if living in a content fashion in a dementia friendly community. This might be a dangerous conclusion.

A recent study of “meaningful activity for persons with dementia” from the perspective of the family caregiver, by Dr Kaitlyn Roland, PhD, and
 Dr Neena L. Chappell, published in American Journal of Alzheimer’s Disease and Other Dementias (2015, Vol. 30(6) 559-568) emphasises the importance also of participating in the community for improving health and wellbeing:

“Caregivers consider activity outside the home to be beneficial for the general health of the PWD (9.7%), including exercise, leisure games, and social outings. Activity participation keeps the body strong, maintains memory, and reduces anxiety. Of those who consider the health benefits, 77.2% emphasize physical exercise as imperative for fitness, cognitive function, improved mood, and secondary muscle weakness.”

Physical health and participation in a dementia friendly community clearly then have a beneficial effect to one another. To this end, Admiral nurses from Dementia UK, clinical nursing specialists in dementia, therefore have a critical role, but underlying this is a strong sense of the importance of disability rights and acknowledgement of diversity, as all three contribute to one of the most substantial possible outcomes of ‘dementia friendly communities’ – and possibly the hardest to define of all.

And that, of course, is dignity.

 

 

@dr_shibley

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Time for the ‘little platoons’ of Dementia Friends to give way for something more impressive

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Although never in the Coalition agreement, the Big Society was the ‘next big thing’ of the David Cameron government. Cameron boasted, at the start of that period of forced political marriage, that he wished his tenure of office to be judged by three things: Afghanistan, the reduction of the deficit, and ‘the Big Society’.

The Big Society never achieved traction despite many many launches and relaunches, lunches and re-lunches. Rather like Cameron himself, the idea was tolerated rather than loved. The Big Society, Cameron admitted, was not supposed to be an original idea but a rebadging of inherently worthy elements of society: in other words, devolution of purpose to members of society, a reduction in the top-down power of the State, and ‘social action’.

Irrespective of the nauseating graphics on Twitter, actually, social action has been done to death, along with call to actions. The ideological priority placed better customer service with a leading high street brand as a high priority in the dementia friendly community than improved human rights of residents in care homes.

It was always said that dementia friendly communities was ‘more than health and social care’, but the result always was nearly ubiquitously to expunge discussion of health and social care needs of people with dementia and carers out of the equation. Social care was diabolically addressed in the original 2012 Prime Minister Dementia Challenge, and the rest is history.

Well, relatively recent history to boot plays this out. At the weekend, the NHS was controversially called a ‘humanitarian crisis’ by the Red Cross, but putting aside the fairness of equating the NHS to Syria or Yemen it is undeniable that the 800,000 or so people with dementia with their complex comorbidities are amongst those caught up in waiting for hours to become admitted to NHS hospitals and amongst those to be stuck in hospitals without prompt care packages.

And the NHS crisis is not simply a crisis of the NHS. It is a crisis of the whole system, especially housing and social care, and whilst these continue to be neglected compared to leading high street brands and social enterprises specialising in dementia friendly gimmickry, the dementia friendly new world cannot materialise.

At around 2011 and 2012, Jeremy Hughes CBE, nearly appointed CEO of the Alzheimer’s Society, made numerous noises along with then Tory Minister for Civil Society Nick Hurd MP about how “dementia friends”, a call to action in dementia awareness, was a good example of how the third sector (no longer to be called the ‘voluntary sector’), the State and the community could all work together. This was apparently ‘the Big Society in action’.

Ideologically, this came at the time of wishing to liberalise the NHS market, while personal budgets continued to be rolled out through the back door in social care policy, through the Health and Social Care Act (2012). The ideological machinery was set up to outsource and sell off bits of the State in delivering dementia care through the dreaded section 75.

Cameron, in rolling his sleeves up, is thought to have been inspired by the talk of ‘little platoons’ of that other great Conservative (other than him) Edmund Burke. This referred to an army of little busybodies up and down the land who would, say, be able to buy their local refuse collection services to run them.

And the Dementia Friends Champions, run by Angela Rippon CBE, were the modern equivalents of the little platoons. And Dementia Tsar, Prof Alistair Burns CBE, would promote Dementia Friends and latterly see to fruition a NHS Transformation Network which omitted caring well.

The lack of ‘caring well’ in the ‘living with dementia’ network is, make no mistake about it, a national disgrace. It is a very loud insult to the million or so unpaid family carers of dementia. It is a disgrace to respite care services. It is a disgrace to home care services. It is a disgrace to clinical specialist nurses, consistently and comprehensively given short shrift from the “dementia friendly community” despite robust agreement on their enormous clinical volume.

And, at the weekend, the new Conservative Prime Minister, Theresa May MP confirmed in both an article in the Sunday Telegraph and an interview with Sophy Ridge for Sky, that she wished to see a ‘sharing society’ rather than a ‘big society’. I quipped with Sir David Nicholson, former CEO of the NHS, that sharing of risk was of course what enabled the provision of universal health care – and David said in a tweet ‘that is at the heart of it’.

I tweeted that the shared society was if the work by Phillip Blond in the think tank Respublica, though to have heavily influenced the Big Society, had never happened.  Blond responded also back in a tweet that one couldn’t be so sure.

From what little we do know about May’s new vision, and we do know she doesn’t like giving a ‘running commentary’ on anything, the shared society is less about the rights of individuals but their collective responsibilities, in which the State might possibly intervene to fix injustices.

At the moment, there are thousands of people with dementia and carers suffering from poor or no care, completely untouched by the little platoons of the Dementia Friends brigade. The ‘Care Connect’ offering of 2012 in care homes never quite happened. The vision of someone with a forget-me-not badge would help out somebody fumbling with change in Sainsbury’s, or be able to make a new diagnosis of dementia in Tescos, did not quite happen (and good thing, many would argue, too).

Unfortunately, resource allocation in services is a zero sum gain, and the millions pumped into Dementia Friends have seen sacrifices elsewhere. The gravy train of Dementia Friends, with a less than enthusiastic ‘social movement’ some conscripted online out of desperation, needs to give way to the shared society of better State intervention on enhancing health and wellbeing in dementia, particularly through more and more highly trained social care practitioners, more AHPs, more Doctors and more specialist clinical nurses.

The Big Society is dead. The dementia ‘awareness’ has been a very good thing – but it is time for the Dementia Friends to make way too.

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A design for dementia friendly communities to benefit the tyranny of the majority?

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Nobody lives with dementia on its own. Many people living with dementia live with at least a few other conditions. Their health needs are complex, particularly since ‘dementia’ embraces itself more than a hundred different conditions manifest in often very different ways.

At the time of the Prime Minister Dementia Challenge (2012), the Alzheimer’s Society found an instant magic way of getting people to volunteer into promoting dementia awareness. It would be naïve not to expect that some of them would become brand ambassadors for the Alzheimer’s Society, even though the Alzheimer’s Society claimed not to be the same as Dementia Friends (despite the owner of the trademark being the Alzheimer’s Society, the use of the same corporate font FS Albert, the copious mention of Alzheimer’s Society in press releases and press reports.)

Far from promoting diversity, “dementia friendly communities” in England seems to be channeled through some weird dystopic corporate capture, including favoured outcomes for grant applications with the term ‘dementia friendly community’ in it, official award ceremonies, and regulatory capture through the official ‘recognition process‘.

In the real world, dementia care is on its knees. Social care has never had it so bad, with its funding having not been protected since 2010. The vast majority of NHS Trusts are now in financial distress due to gross underfunding and the sequelae of private finance initiatives, meaning that people with dementia are stuck in hospital through no fault of their own. It’s all very well allowing carers to visit outside visiting hours, but this is not an adequate solution to the needs of carers, whose psychological resilience needs protecting to avoid premature illness of carers or premature transfer into acute hospital or residential care of people with dementia.

At every possible juncture, the undeniable value of clinical specialist nurses, dementia advocacy services, or respite care services have been consistently rubbished, culminating in the airbrushing of ‘caring well’ from the NHS Transformation Network for living with dementia altogether.

dementia-well-pathway

[Reproduced under then Open Government license.]

The English dementia strategy was not renewed in 2014, and its lack of direction, apart from promoting the corporate branding of the Alzheimer’s Society, arguably has become a huge embarrassment to many professionals and practitioners specialising in the field, who can see health and social care systems at breaking point. The phrase “tyranny of the majority” (or “tyranny of the masses”) re-surfaced in interpretation of the #Brexit vote, and had been used in discussing an inherent weakness in the system of pure direct democracy and majority rule. Tyranny of the majority involves a scenario in which a majority of an electorate places its own interests above, and at the expense and to the detriment of, those in the minority, where by that detriment constitutes active oppression comparable to that of a tyrant or despot.

Nobody as such voted for ‘dementia friends’ or ‘dementia friendly communities’, and yet millions of pounds have been pumped into this initiative, with no official report as yet about outcome measures. Newspaper headlines are still littered with phrases such as ‘dementia sufferers’ and ‘dementia victims’, despite a nirvana of grants being awarded for empowerment, engagement and language in dementia – while enhancing health and social care in dementia is on its knees. “Advocates” call cheerfully, amidst their conference appearances, for greater GP training, while not seeming to appreciate that GPs have gone way beyond breaking point e.g. weeks to get a routine GP appointment, no more than a few minutes to see each patient with multiple co-morbidities. Potentially, through tyranny of the majority, a disliked or unfavored ethnic, religious, political, or racial group may be deliberately targeted for oppression by the majority element acting through the democratic process.

Part of achieving a ‘tyranny of the majority’ is through a “centralisation excess” when the centralised power of a federation make a decision that should be local, breaking with the commitment to the subsidiarity principle. In other words, your dementia friendly community is fine, and can be ‘badged’, so long as it conforms with ‘our’ vision. The new trademark for the Alzheimer’s Society (UK00003172674) was entered officially on the UK trademark register in November 2016, including even Class 18 (for trunks and travelling bags; handbags, rucksacks, umbrellas, parasols and walking sticks). The word mark is “United against dementia”, but with the airbrushing of clinical specialist nurses in high quality care in dementia, or without any effort at adequate resourcing of the social care profession, the three words are at danger of being entirely vacuous.*

In a parallel universe, in other words of academic research, professionals and practitioners there has been real progress in the definition of health to promote ‘social wellbeing’, towards a more dynamic one based on the ability to adapt and self-manage. Three domains of health are now characterised by the World Health Organisation: the physical, mental and social domains. Physical health was characterised as being capable of maintaining physiological homoeostasis through changing circumstances. Mental health as a sense of coherence, which contributes to the capacity to successfully cope and recover from psychological stress. Social health was characterized by three dimensions: (1) having the capacity to fulfil one’s potential and obligations; (2) the ability to manage life with some degree of independence, despite a medical condition; and (3) participation in social activities including work (Huber et al., 2011). These domains are fundamental to WHO’s community based rehabilitation where enhancing health and wellbeing in dementia is more than a mere corporate marketing exercise for ‘dementia friendly communities’. It engages and empowers specialists with years of experience, such as physiotherapists, occupational therapists and community nurses, promoting human rights and social value. We should be looking for excellent islets of excellence abroad for inspiration for best practice (e.g. Buurtzorg), as well as some of the excellent examples in the ‘enhancing health in care homes’ project from NHS England.

According to Vernooij-Dassen and Jeon (2016), the added value of the concept of social health lies in various core features. It is an umbrella for an array of concepts reflecting human capacities to participate in social life, such as reciprocity and dignity, and resilience; and yet it is explicitly said in the pre-scripted patter of ‘Dementia Friends’ that Dementia Friends are not supposed to befriend people with dementia, a departure from the Japanese ‘caravan’ scheme on which Dementia Friends is meant to be loosely based. Social health is, rather, clear overarching concept facilitating communication between the psychological, social and biomedical sciences; it does not focus on deficits but on remaining capacities, and more importantly, it relates to normalcy. The new concept of social health proposed by Huber and colleagues, is in line with the social model of disability, which places an obligation to value what people can do rather cannot do, but likewise imposes an obligation to make reasonable adjustments for the things which people cannot do (e.g. memory aids for memory problems).

In the past few decades, research among people living with dementia has addressed several aspects of social health based on a variety of theories. This has resulted in a useful, but somewhat fragmented knowledge base in this field. For example, more than 40 years ago Lawton and Nahemow (1973) described the environmental docility hypothesis which relates to the first dimension of social health, focusing on the capacity to fulfil one’s potential within enabling or disabling environments. And indeed we can see the seeds of this in the WHO Aged Cities and RSA Connected Communities, which predate ‘dementia friendly communities’ from the Alzheimer’s Society. The NHS and social care infrastructure has a critical rôle to play in self-care and self-management, or “hospital at home”, highlighting the remaining ability to manage life, despite a medical condition, provided that improved resources for community services are front loaded prior to any savage hospital cuts. Based on such evidence, and building on remaining cognitive skills, several interventions have been developed in dementia care such as the home environmental skill building program, cognitive rehabilitation, and cognitive stimulation therapy. These would have been natural bed fellows of the dementia friendly communities approach, save for the issue that funding for psychological therapies has crashed too.

The concept of personhood (being a person in relation to others) primarily emphasises the importance of social participation for people with dementia. Interventions focusing on maintaining or improving social relationships with people living with dementia, e.g. person-centred care and reminiscence, appear to not only have beneficial effects on social interactions, but also improve mood and cognitive function, reduce the use of antipsychotics, and enhance the quality of life of people with dementia in residential care settings. Having dementia communities framed by a tyranny of the majority, for example the Alzheimer’s Society and Alzheimer’s disease International, cannot possibly allow enhancing health and wellbeing in dementia to flourish. Being ‘united’ in dementia would mean substantial funds from national societies directly to the world stakeholder group of people living with dementia, Dementia Alliance International (DAI), rather than national societies being rather obstructive in this cause? As an impartial independent observer, I can only say that DAI must be for the benefit of people living with dementia primarily rather than for the benefit of Big Charity.

The system though has been designed to cascade down a particular ‘vision’ of dementia friendly communities, where brand ambassadors can locally affect local economies through ‘badging’ dementia friendliness – this might include getting a chain of high street banks to say they’re ‘dementia friendly’, whatever the actual reality of the boots on the ground. The whole deception comes from the appearance of localisation despite strong central influences. This is understood best through the notion of “swarm intelligence” (SI) is the collective behaviour of decentralised, self-organised systems, natural or artificial. The concept is employed in work on artificial intelligence. The expression was introduced by Gerardo Beni and Jing Wang in 1989, in the context of cellular robotic systems.

SI systems consist typically of a population of simple agents or “boids” interacting locally with one another and with their environment.  The agents follow very simple rules, and although there is no centralised control structure actually dictating how individual agents should behave, local and to a certain degree random interactions between such agents lead to the emergence of “intelligent” global behavior, unknown to the individual agents. Examples in natural systems of SI include ant colonies, bird flocking, animal herding, bacterial growth, fish schooling and microbial intelligence.

Critical to this are the ‘dementia friend champions’, known in corporate world as the “brand ambassador”, a person who is hired by an organisation or company to represent a brand in a positive light and by doing so help to increase brand awareness and sales. The brand ambassador is meant to embody the corporate identity in appearance, demeanor, values and ethics. The key element of brand ambassadors is their ability to use promotional strategies that will strengthen the customer-product-service relationship and influence a large audience to buy and consume more. Predominantly, a brand ambassador is known as a positive spokesperson, an opinion leader or a community influencer, appointed as an agent to boost product or service sales and create brand awareness.  Big Charity is not concerned with ‘sales’ as such, though it appears to have been unhealthily obsessed with fund raising for the sake of it, and excessive use branding and public relations.

The term “brand ambassador” loosely refers to a commodity which covers all types of event staff, varying between trade show hosts, in store promotional members and street teams. The fashion industry however, solely rely on celebrity clientele in order to remain brand ambassadors. Furthermore, brand ambassadors are considered to be the key salesperson for a product or service on offer. Critical in the functioning of Big Charity has been the engagement of a super-breed of highly articulate and experienced “celebrity persons living with dementia”, adding the “authentic voice”, even if a consequence is to drown out professionals and practitioners who also want to make health and social care systems succeed.  It has become excruciatingly embarrassing to read that the outcome of ‘organic’ “involvement and engagement events” conclude with the advocacy of dementia support workers and dementia friendly communities, both high vis products of the Alzheimer’s Society, while the NHS and social care systems are on their knees? But be in no doubt the real patient carer voices are extremely important, but often a third party (e.g. social enterprise, university grant recipient) benefits too these days, and certain things might become lost in translation thus.

But when policy goes awry, it is the moral responsibility of people to say so, even if grants depend on it. As the great parliamentarian Edmund Burke said, “The only thing necessary for the triumph of evil is for good men to do nothing.”

References

Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H. How should we define health? BMJ. 2011 Jul 26;343:d4163. doi: 10.1136/bmj.d4163.

Dröes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, Roes M, Verhey F, Charras K, The Interdem Social Health Taskforce. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health. 2016 Nov 21:1-14. [Epub ahead of print]

Lawton, M.P., Nahemow, L. (1973). Ecology and the aging process. In C. Eisdorfer & M.P. Lawton (Eds.), The psychology of adult development and aging (6th ed.) (pp. 619–674). Washington, DC: American Psychological Association.

Vernooij-Dassen, M., Jeon, Y.H. (2016). Social Health and Dementia: The power of human capabilities International Psychogeriatrics, 28(5), 701–703. doi: 10.1017/S1041610216000260

 

* Please note that the publication of the trademark is in the public domain, and therefore under the law of equity I am fully entitled to publish a link to it under English law.

 

@dr_shibley

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The need to add light not confusion in navigating our way forward

Not all change is progress. It would be tempting to consider this as ‘dark times’ with certain domestic and international events having happened, but it’s probably worth remembering that these events have probably happened for a reason.

Not all power is influence. The problem of course with cosying up to other power is that you can lose influence. This might happened with certain big charity we all turn to, to lead the way. Nowhere was this witnessed more bitterly in recent times as in the ‘social care crisis’ which headlined on the news. No amount of public concern, such as lack of funding settlement, social care quality and safety incidents, senior personnel in think tanks, senior politicians from all political shades, or reports even on BBC Radio 4’s Today, seemed to make any difference.

Seeing a way forward is crucial for helping persons with dementia and those who care for them. The answer of course does not lie in ministerial statements about electronic patient care records or GP access, but they are also pieces of the jigsaw to see the big picture. But what has concerned me is that people can know what  to expect following a diagnosis of dementia in England, and, more importantly, have confidence that the right people are helping them at all times.

The lack of ‘caring well’ in the NHS Transformation ‘Well Pathway for England’ revealed a real lack of understanding of what dementia is in policy makers in England. This lack of caring well sent out the clear message of a V sign to carers’ groups, the million or so unpaid family carers, respite care services, domiciliary care services and clinical specialist nursing care services, to name but a few, only to be replaced by other memes such as “training well” or “commissioning well”. Why stop there? Why don’t we measure the RTs of the CQC or NHS England, in “engaging well”?

Quite frankly, if there’s no caring well, it’s a case of leadership from the school of the blind leading the blind. There’s no point hundreds of thousands of pounds being pumped into metrics, if there’s no culture of wanting to commission services which represents the needs of people. This might include migrant populations with poor language and literacy skills in inner cities, or people resident in rural communities deep in the countryside. Or even hospices in England.

The old adage goes that if you value something measure it. Fine. But not all that matters can be measured. For example, in the drive to bump up diagnosis rates in England, were clinicians and persons with dementia themselves given sufficient freedom to take account of individual diagnosis-seeking behaviour? The issuing of a diagnosis of dementia is not like issuing a car parking fixed penalty fine. Where were the support services for the newly diagnosed persons with dementia? Or do the metrics cover, say, the attitudes of that one Roma person living alone in England with dementia, and her attitudes towards dying?

I believe that all people involved in policy in England should be aware of the enormous responsibility they have. I am not in a policy job, and do not have any vested interests, so please forgive me for speaking openly on this.

There’s been far too much protection of vested interests, and not working in a collaborative sense for fear of diluting a personal brand. There’s been a historic lack of respect for the social care profession, and I believe you can see the roots of this as far back as in the 2012 Prime Minister’s Dementia Challenge. In a way there’s been too much deference to power, when some of it’s been the ‘wrong power’. Would the right power have been so relaxed over a social care system being brought to its knees due to years of underfunding?

There’s been too much policy being repackaged in cycles of a few years, without insufficient progress. I think promoting the wellbeing of people, and encouraging social health, is at the heart of social care, and, for dementia, so is an understanding of mental health, and yet the social care is still not being given enough tools ‘to do the job’ properly. It seems almost that commissioning a cheap lapel badge of friendship will instead suffice.

There’s been insufficient critical thought of the ‘dementia friendly communities’ policy. I believe most strongly that there’s been massive progress in community engagement, and substantially more meaningful leadership from persons with dementia and carers. Don’t get me wrong. But there was also a nasty undercurrent of ‘we don’t believe in society’, where the ‘evil State’ would be replaced by localism (and devolution), “a call to social action”, and ‘public service reform’ – but, this really meant, in the age of austerity, this meant getting rid of life-maintaining lifelines for people with dementia and carers. But if you don’t believe ideologically in society, and can market community initiatives through strong brands and award ceremonies, it won’t matter if A&E targets aren’t met, care packages aren’t ready, and delayed discharges are through the roof.

The argument that I am partly making is that in the last few years, due to a combination of reasons, not least derision of academics and practitioners/professionals in dementia, things have been made unnecessarily worse by adding a lot of unhelpful red herrings to policy. But a lot of good has also been done.

What worries me now is that I can’t name a single person who has a handle on the big picture – whether that’s on the genuine issues of safeguarding in personal budgets, or provision/equity of palliative care services in dementia – at a national level. This is symbolised by the fact that we don’t actually have an English dementia strategy, and haven’t had one since 2014. Somehow some amazing initiatives, such as Dementia Care Mapping, haven’t been snuffed out by the overwhelming sense of confusion in national policy. Or the fact we know many care homes will now have to shut down because of financial pressures on small providers doesn’t extinguish some remarkable people who do work in the residential care sector.

What is the number one solution? I think money won’t solve everything, but Sustainability and Transformation Plans, with all the best designs in the world, will not work unless properly funded likewise. Also, I think it’s time for the correct voices to step up to the plate and get louder, such as unpaid carers or aspiring recipients of domiciliary or residential care, or people newly diagnosed with dementia, and some of the incorrect voices who speak the loudest due to their big cheque books to shut up more.

That was easy wasn’t it? Bah humbug.

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