Supporting People Living with Dementia: What should good look like?

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Findings from a review undertaken at IPC by Dr Melanie Henwood, Visiting Research Fellow, distil the research evidence to explore ‘what good looks like’ in supporting people living with dementia. Understanding the evidence is essential for commissioners and providers if people’s quality of life is to be maximised, and the best outcomes and value for money are to be achieved.

A distinguishing feature of advanced western societies over the last century has been the growth in life expectancy and the increase in longevity. The latest data for 2018-2020 found life expectancy at birth was 79.0 years for males and 82.9 years for females. For those people who had reached 65 during this period, males could expect a further 18.5 years, and females 21.0 years. While the extension of life is a matter for celebration, the challenges of an ageing population are also undeniable, particularly if the additional years of life are characterised by ill health and increasing disability. Of greatest significance is the prevalence of dementia which rises inexorably with increasing age; among people aged 70-74 only 1 in 71 have dementia; but this is true of 1 in 13 of people aged 80-84, and around 1 in 5 of people aged 90+.

Caring for the estimated 850,000 people in the UK living with dementia is one of the most substantial challenges for health and social care systems. But what should that support look like? The standard service ‘offer’ is typically residential/nursing care for people with the most advanced needs, and a range of support in the community for others. This typically includes respite services; day care, and some specialist support through memory clinics and dementia nurses. Too often people’s experience of living with dementia, and the experience of their family carers, is of a lottery of support, and of services that do not provide enrichment or promote wellbeing.

Our analysis identified three key dimensions that need to be central to commissioning strategies:

• Timely diagnosis and prevention
• Dementia care and support
• Support for carers of people living with dementia.

Timely Diagnosis and Prevention

The evidence indicates that up to 40% of dementias could be prevented, and the contributory risk factors can be modified; there is great potential for people to reduce their individual risk of developing dementia, and this is true throughout the lifecycle. Research continues to prioritise the search for a cure and effective treatments for dementia but there is no ‘magic bullet’ and pharmaceutical breakthroughs are likely to benefit people in the early stages of dementia. However, for people already living with dementia, particularly at advanced stages, such developments offer no immediate help or hope.

Diagnosing people at the right time is fundamental in ensuring they are able to access support and achieve the best quality of life they can, but many people are never diagnosed – perhaps as many as two thirds of those living with dementia. The chances of being diagnosed are unequal and there are differences for example between Black and Asian populations compared with White people. Some of the difference may reflect lower incidence, but is also likely to indicate underdiagnosis.

People have cultural beliefs and understandings about dementia, some of which are likely to have a negative impact on seeking diagnosis. Research points to the delay of more than two years that typically occurs between a person first thinking that ‘something is not quite right’ to actively seeking advice and a professional opinion. This reluctance to get a diagnosis is likely to reflect complex beliefs and emotions, including fear of dementia, and a sense of despair in the absence of a cure.

One of the most significant behaviours that can be protective against dementia is the level of social engagement, and maintaining social activity following a diagnosis is also important in promoting people’s wellbeing.

Dementia Care and Support

The principle of person-centred care is a key value embodied in The Care Act, and emphasises adopting a strengths-based approach to understand the whole person and their life experience. This principle should underpin all care and support for a person living with dementia.

Good quality care for people living with dementia is characterised by features including:

• Timely, flexible and individualised support.
• Management of co-morbidities.
• Delay (or avoidance) of admission to long-term care.
• Support delivered by workers with dementia-specific training and knowledge.

Technology has a role in supporting people living with dementia, particularly around safety and security. However, assistive technology and telecare systems have tended to develop without evaluation, or with weak evidence. This suggests the uncritical use of technologies rather than considering what is best and most appropriate for a person in their individual circumstances.

There is some evidence that music and arts participation for people living with dementia is of value, both through the self-reported benefits of engagement, but also in the wider impact on health and wellbeing, although the need to improve the quality of research evidence is also clear.

Joint commissioning between health and social care of support for people living with dementia appears to be less prevalent than in generic support for older people. But given the often complex health and care needs of people with dementia it is important to address health and wellbeing in the broadest terms. The emergence of Integrated Care Systems should facilitate more holistic care across populations, including for people living with dementia.

The difficulties in practice of integrating support can create barriers, not least in the different models and understandings that characterise health and care systems. Tensions between person-centred approaches and task-based requirements of care can also be a barrier to quality care, and the implications for training and better understanding of community-based support by nursing students and HCAs for example, are especially clear if care is to address the cognitive and emotional lives of people living with dementia.

Supporting carers of people living with dementia

A vital part of commissioning quality support for people living with dementia must also be support for their carers, with attention to building resilience, and enhancing quality of life and wellbeing. This is particularly significant given that most people with dementia live in the community and do so with the help of family carers (typically a partner or an adult child). The research literature identifies that carers of people with dementia are more likely to experience high levels of ‘carer burden’ impacting on their own health and wellbeing.

Evidence about what works in carer support is not strong, but this does not mean there is no impact, but that evaluations have often been of poor quality or ill-defined. Evidence for interventions that may have a positive effect for carers includes:

• Opportunities to share with and learn from others (carers or professionals) may have a positive impact on depression and anxiety, and on subjective ‘burden.’
• Reframing the way carers think about dementia may have a positive impact on mental health, subjective burden and stress.
• Meditation techniques may have a positive impact on depression.
• Psychosocial interventions delivered virtually may have a positive impact on depression and anxiety, and on subjective burden and stress.

Building carer resilience through good social support reduces carers’ depression, anxiety, stress and feelings of ‘burden’. Enabling carers of people living with dementia to maintain and extend their social support networks is therefore of particular value.

Conclusions

What good commissioning of support for people living with dementia and for their carers should look like is multi-layered and complex. It requires a long-term strategic commitment and ensuring wherever possible that support is evidence-based and informed. In addition to the central importance of health and care support, there are implications for wider commissioning and services including the built environment and transport for example. Commissioners and providers should consider how well their current service offer enables people living with dementia to participate in their communities as fully as possible, for as long as possible. Our review explores a range of evidence on what can enable people to maintain independence and wellbeing, and how best to support people living with dementia to have a quality of life grounded on what matters to them, and to their carers and family members.