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Parity of esteem must ensure wellbeing in dementia research is not seen as inferior

The “parity of esteem” refers typically to mental health not being seen as inferior to physical health. But there is now a political drive now which has biased the research world in dementia. It is more prestigious, and more lucrative, to study lab-based research into neuroscience, including neurochemistry, neuropathology, or neuropsychopharmacology, rather than more social care practitioner based research, such as wellbeing in everyday life or in care homes. Often social care practitioners, working to the limit, do not have adequate time or resources from the system at large to devote themselves to high quality research in this desperately important area of research.

Quality statement 4 of NICE Quality Standard for “Supporting people to live well with dementia” reads as follows:

“People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.”

NICE further gives the rationale for this as follows:

“It is important that people with dementia can take part in leisure activities during their day that are meaningful to them. People have different interests and preferences about how they wish to spend their time. People with dementia are no exception but increasingly need the support of others to participate. Understanding this and how to enable people with dementia to take part in leisure activities can help maintain and improve quality of life.”

People with dementia living in residential care homes may spend the majority of their time engaged in no activity, apart from the usual personal care activities. But such individuals often have complex mental health problems, disabilities and social needs. Activities do not need to be structured or complicated. The lack of meaningful activities has been associated with a decrease in residents’ functional status, increased behavioural problems, social isolation and poor quality of life. Although attempts have been made to identify what sort of activities contribute to the well-being of people, little is known about their views regarding what constitutes meaningful activity. While there is increasing evidence of the positive benefit of intensive personalised or more one-on-one activities for residents with dementia), many residents have very limited social interaction with staff or other people. Many older people with dementia live in care homes, but they often lack appropriate daytime activities, with many homes attempting to meet their needs by providing group activities run by unskilled staff on zero hour contracts (or sometimes on less than the minimum national minimum wage.)

But people living in residential care can become enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice. This is more evident in moderate to severe stages of dementia. Providing more comprehensive training for staff working in care home environments is a high national priority.

Activity has therefore been recommended for people with dementia as a means of retaining human abilities and function,by maintaining their connection with the environment and encouraging social interaction. It has, unsurprisingly, been recommended that, in the middle to late stages of the disease, the activities should focus on fine- and gross-motor and sensory activities. Consistent with this recommendation, there are currently two main approaches with promising results in people with moderate to severe dementia: multi sensory stimulation and motor stimulation.

It is recommended that nursing staff encourage should activities that stimulate people with dementia, even when there is limited time or room for social contact. An example of this situation are treatments with recreational activities, such as games and art therapies (eg, music, dance, art), that are frequently offered to people with dementia in nursing homes or day-care centres. Needs for social interaction and physical movement, for example, might be addressed by carefully selected group activities and exercise. However, a gap exists between research on person-centered dementia care and its incorporation into clinical practices. The gap persists due to negative perceptions of dementia held by practitioners , the lack of investment in education for practitioners delivering dementia care, and appropriate knowledge translation methods for health care practitioners.

By encouraging residents to do what they can for themselves during normal daily activities, staff can facilitate a sense of familiarity, competence and security. In theory, this approach purports that the ordinary and familiar things people do every day promotes and supports a sense of well-being. In addition, teaching staff to see the person and not the disease contributed to a change in the culture of care within the units; this is of course a key message of the national “Dementia Friends” campaign currently underway. There is a need, overall, to develop new alternative treatment methods in the care of patients with dementia.

The high prevalence of dementia within care homes means that any interventions provided within this setting are likely to reach a significant number of people with dementia and hence be more cost effective. Physical inactivity and disability in elderly institutionalised patients may negatively affect their ability to perform activities of daily living and worsen their health related quality of life status. An intervention suited to nursing home residents with dementia that would increase positive mood would improve quality of life for the resident. Traditional interventions to improve mood such as cognitive and interpersonal therapies require communication abilities that may be compromised in individuals with dementia. Negative affect, which is frequently exemplified as anxiety, sadness, and anger, is common in community dwelling persons with dementia and is often associated with behaviours that are difficult for family caregivers to manage. Positive mood is an integral component of quality of life for nursing home residents with dementia.

Music and dance are often incorporated into activities for people with dementia who are in long-termcare. This is termed ‘dance therapy’. The emotional response to social dancing and walks in persons with dementia was studied to better understand the feasibility, popularity, and meaning of these activities from the perspective of the patient. Dance research has highlighted improvements in physical health and shown increases in social activity among healthy older adults. A longitudinal study has even also reported that dancing reduced the risk of developing dementia.Drama is particularly effective in helping clinicians attend to the human dimensions of care, achieve a better understanding of patients’ experiences, and appreciate the power imbalance in the patient-clinician relationship. Drama is both a method and a subject, seen from an holistic perspective, and integrates thoughts, feelings and actions. It includes, for example, group activity in fictional role-play, where the participants can learn to explore issues, events and relationships. Drama has been used as a method within nursing education and is also suggested to be used in clinical settings.

Exercise has the potential to meet these requirements. Evidence currently suggests that exercise and some cognition-focused intervention approaches can be used to elicit functional improvements in older people and, to some degree, those diagnosed with dementia. Indeed preliminary results indicate that it is feasible to conduct a combined aerobic and strength training program in institutionalised patients with dementia. For example, a “chair-based exercise program” is associated with reduced symptoms of negative affect in residents of a secured dementia unit in a long-term care facility. A high-intensity functional weight-bearing exercise program seems to reduce decline in activities of daily living related to indoor mobility for older people living in residential care facilities. At the other end of the spectrum, “Tai Chi” is a mind-body exercise combining relaxed physical movement and meditation, and has been suggested to have many health benefits.

The “Well-being and Health for People with Dementia” research study (“WHELD”) combines the most effective elements of existing approaches to develop a comprehensive but practical staff training intervention. This optimised intervention is based on a factorial study and qualitative evaluation, to combine: training on person-centred care, promoting person-centred activities and interactions, and providing care home staff and general practitioners with updated knowledge regarding the optimal use of psychotropic medications for persons with dementia in care homes. red care training intervention in care homes worldwide.

“Dementia Adventure” connects people living with dementia with nature and a sense of adventure. Dementia Adventure is a multi-award winning social enterprise. We are based in Essex but work nationally and have an international following. They provide training, research, and consultancy services – all with nature in mind. Income from these activities, donations and grant funding mean we can provide Dementia Adventures from park walks to sailing holidays.

Alive! is a charity dedicated to improving the quality of life for older people in care by enabling their participation in meaningful activity. They run hour-long activity sessions for older people in over 350 care homes and day centres across the South and South West of England. They also run one-to-one sessions for individuals who are not able to join in with a group Their sessions are designed to be effective for people living with Alzheimer’s disease and other forms of dementia, physical disabilities, neurodegenerative illnesses such as Parkinson’s disease, learning difficulties and mental disorders. In one event, “Our Paint Pals” created a piece of art under the theme ‘It’s our world’ and showed how being creative can bring the generations together.

Much more research needs to take place in care homes to see what constitutes an enriched environment, how and why. But these are early days. Such research must not be seen as ‘inferior’ to the research which is lab based – a new “parity of esteem” has now emerged. In summary, “parity of esteem” must ensure wellbeing in dementia research is not seen as inferior.

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