The title of the book reflects the fact every person has a human right to health, and that wellbeing is a critical part of wellbeing. It was published earlier this month by Jessica Kingsley Publishers (page including pre-publication reviews here).
Many of the issues raised in the book coincidentally have been raised in the draft World Health Organization global ‘draft action plan’, worth a look at here http://apps.who.int/gb/ebwha/pdf_files/EB140/B140_28-en.pdf, published 23 December 2016. It is felt that while this document is not ‘perfect’ it is a good start. For example, the palliative care approach is specifically signposted in clause (56).
People are entitled to the best of care regardless of setting – for example, Dementia Care Mapping™ (DCM™) has been used as an observational tool which has been designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. This book is, in fact, in part dedicated to Dawn Brooker, and frequent references are made in the text to Tom Kitwood. The book is also dedicated to Martin Rossor, national director for dementia research, for whom I worked in 2003. I do not of course wish to speak about the specialist area of personhood as I feel that would be entirely inappropriate. An excellent book on this area, however, is “Person-Centred Dementia Care, Second Edition: Making Services Better with the VIPS Framework”, by Dawn Brooker and Isabelle Latham, also published by Jessica Kingsley Publishers https://www.amazon.co.uk/d/Books/Person-Centred-Dementia-Care-Second-Framework/1849056668.
My book is intensely evidence-based but not in a way, I hope, which is off-putting to the primary audience – who are not commissioners, but persons living with dementia and carers. I certainly believe that it is the primary duty of researchers at least to think about the basic translation of research into practice. Many of the interventions and service developments will ultimately rely on this.
Thankfully, there are people in care settings who think very carefully about the environment of care, for example helping carers identify, find solutions and create a care culture to overcome mealtime eating problems in dementia. ‘Working with’ collaboratively not working to patients has been a fundamental change in attitude for organising services and research, and the fundamentals of co-production are intimately linked to citizenship and human rights. And we do need to ensure people get access to the right care at the right time. For example, there can be difficulty seeing your GP, or dementia care is an increasingly important strategic consideration for palliative and end of life care providers, including hospices. It is noteworthy that, through working in partnership with their local community and care providers, hospices can ensure that the best of hospice care is extended to everyone affected by a diagnosis of dementia within their local community.
Responding to the challenge
The NHS Five Year Forward View, the current strategic ‘masterplan’ of the NHS, emphasises integration, personalisation and empowerment:
“There is broad consensus on what the future needs to be. It is a future that empowers patients to take much more control over their own care and treatment. It is a future that dissolves the classic divide, set almost in stone since 1948, between family doctors and hospitals, between physical and mental health, between health and social care, between prevention and treatment.”
Chapter 1, Five Year Forward View, 2014 (https://www.england.nhs.uk/ourwork/futurenhs/nhs-five-year-forward-view-web-version/5yfv-ch1/)
Dementia has been the target of much stigma from society, and despite the rhetoric of ‘parity of esteem’, much more can be done to understand the physical and mental health needs of persons living with dementia. Recent initiatives such as ‘dementia friendly communities’ have identified that dementia is unlikely to be the only medical condition a person might live with long-term, and all that communities should be inclusive and accessible. Preventing certain people from being lonely and isolated has immeasurable social and well-being benefits for the individual. There are some amazing ‘dementia friendly’ initiatives – for example, a visit to the theatre can have a profound impact on people living with dementia and their families. It is crucial that all initiatives are culturally inclusive too, including raising awareness and promoting understanding of dementia within culturally diverse communities, which might mean physically visiting day centres, community groups and religious centres to talk about dementia and tackling the stigma that surrounds dementia.
Dementia is thought to be the most feared condition in adulthood, and this can affect diagnosis-seeking behaviours as well as the message that ‘nothing can be done’ after a diagnosis. A person never receives a diagnosis of dementia alone; so, understanding how the diagnosis impacts on that person and those closest to him or her is of fundamental importance. What happens after a diagnosis can be incredibly complex, and we need health and social care systems which are flexible, adaptable, and correctly resourced to cope. Interventions for living well, supporting well or caring well are not just medical, but can also be psychological (cognitive or behavioural) – and might prevent further decline. Professionals can unfortunately instil a feeling of helplessness in a person diagnosed with dementia, referred to within Kate Swaffer’s construct of ‘prescribed disengagement’™.
I propose in the book that there are key demands of integrated care which I picture in the Preface as spokes of an umbrella.
‘Responding’ to a new diagnosis of dementia needs new, flexible ways of adapting.
Take for example the description of Wendy Mitchell – living with dementia:
“However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.”
(Wendy Mitchell’s blog – “Which me am I today?” https://whichmeamitoday.wordpress.com)
Dementia is a prevalent condition, but trends are complicated due to the effect of risk reduction work, the numbers of our ageing population and improved rates of diagnosis nationally. There are approximately about 900,000 people currently living in the UK with dementia. However, the nature of the condition means that managing it can pose unique and sometimes difficult issues, both in the community and in other care settings, and “dementia is everybody’s business” meaning that this is a widespread societal concern, not just the caring professions.
With the right support and opportunities, people with dementia and carers can successfully communicate, engage, participate and continue to be part of relationships and communities, and this is no matter how advanced their dementia.
This third book provides some of the ingredients to a recipe providing the change for people living with dementia and carers would be supported in a holistic, person-centred way. It is impossible to deliver person-centred care in an exceptional way, without staff feeling properly supported and empowered to fulfil their roles. The language we use is a critical aspect to this. Notwithstanding, there is a strong sense of interconnectedness in the ‘dementia’ sphere, and people in person-centred integrated care tend to be aligned to certain values of openness, trust, valuing difference, innovation and collaboration.
There have been enormous strides in how people living with dementia are supported, however there is always more to be done. Technology now embraces telehealth, telecare, mobile health, telemedicine, e-health, smart home technologies and Internet of Things, but is increasingly including informatics (including electronic health and care records), big data, artificial intelligence as well as health and care robotics. Digital technology and social networks provide some of the most powerful tools available today for building a sense of belonging, support and sharing among groups of people with similar interests and concerns.
Despite the lack of ‘caring well’ in the NHS Transformation Network, presumably subsumed under ‘living well’ and ‘supporting well’, my book is worth reading with their construct in mind. It can be viewed on this hyperlink: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf.
Cost pressures are requiring providers to find new ways of developing a compassionate, capable and competent, yet affordable workforce. Furthermore, both specialist and generic services can struggle to cope with the increased demand upon services. We know there’s a ‘funding gap’ referred to the ‘Five Year Forward View’. But this should be the driver behind transformation plans. Many people involved in dementia care feel there’s also a ‘time gap’ – people with dementia need more of it and hospitals don’t seem to have any. The experience of someone with dementia is often affected by how well the discharge out of hospital goes. For example, a specialist occupational therapist to make sure we got the discharge process right for dementia patients and focussed on safe transfer of care from hospital into the community. Many would like to give a commitment to really making time for residents in its care homes and houses allows all to be treated as individuals, as this provides an environment where residents who are living with dementia can improve their quality of life.
The pressures on residential care are enormous. Some care homes face insolvency. A person with dementia is an individual with individual needs and changes to the environment can affect that person, and these could include the health and wellbeing of staff. The potential problem with framing promoting wellbeing as ‘activities’ is that the focus instead of being on the person becomes focused on the task. Promoting wellbeing might advance ‘life skills’ and improve mental condition, helping and inspiring participants to reminisce and rediscover aspects of their lives. Ideally then all ‘activities’ would be based on the interests, desires and wishes of our residents, and might include tai chi, massage, cream tea, arts, singing, flower arranging, or music. We know that communication is incredible important. Stories can strengthen emotional links between generations, and help to mitigate against negative effects of the combination of dementia, depression and loneliness in communities.
We live in exciting times.