Personhood and dementia
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At a glance

The recently launched DCAN report “Place, people, purpose and power – promoting the wellbeing of people living with dementia through personalised care and support” by Neil Crowther traces the history of personhood and dementia, its relationship to the personalisation movement more broadly, and where we need to go next. We’re inviting blogs from our network to explore the themes raised in the report. In this blog we hear from Morgan Griffith-David, Care Policy Manager at the Alzheimer's Society.

There are many fantastic examples of where personalised care supports people to “live in the place we call home, with the people and things that we love, in communities where we look out for one another, doing the things that matter to us.” Yet sadly, this is by no means widespread enough for people with dementia to consistently benefit from.

Instead, high levels of unmet need persist within the system where over 200,000 people with moderate or severe dementia with care needs are not receiving support from social care. When people are enabled to draw on care, it is often not personalised to their needs.  Prioritisation of essential personal care (washing/dressing etc.) can mean that people miss out on those things that give their lives purpose and meaning. While essential personal care is vital to enabling people to live, it doesn’t enable them to have a life.

Alzheimer’s Society has long advocated the importance of personalised care for people with dementia being embedded throughout the social care landscape. We work closely with people affected by dementia to identify what high-quality personalised care looks like and make policy recommendations for how this can be achieved. In recent years we have published two reports with a strong focus on personalised care – A future for personalised care and Stabilise, Energise, Realise. Both of these identified an overriding need for the creation of a better social care system that is able to deliver more personalised care.

Given our longstanding campaigning on this issue, we therefore welcomed the Government’s social care white paper, People at the Heart of Care, and the strong focus this vision places on personalised care for people who draw on care and support. However, a vision alone won’t help a person with dementia continue to live the life they want. We agree with the Levelling Up, Housing and Communities Committee’s assessment that there remains “no roadmap, no timetable, no milestones, and no measures of success.” We will now work to hold the Government to account for the delivery of this vision.

The creation of a strong, sustainable, and supported workforce is an integral part of realising People at the Heart of Care’s vision to embed personalised care. Reform for quality of care can’t happen without reform for the workforce. Alzheimer’s Society is calling for a long-term social care People Plan, co-produced with people affected by dementia and the workforce. Training, career progression, a culture of respect and good leaders are basic principles that help create a working environment where people can flourish and do their job well, and should be included in such a plan. We need to see social care sector pay being fairer and properly monitored and more closely aligned to NHS pay scales. Training in personalised care must be key in both initial training for staff first starting work in care, and in ongoing learning and development.

These arguments will be further bolstered when the All-Party Parliamentary Group on Dementia, which Alzheimer’s Society provides the secretariat for, publishes its forthcoming report, due in Autumn, in support of its current inquiry. It will look at how we can build a social care workforce which supports people with dementia to live the life they want to live. The inquiry draws on a range of evidence including a survey of the experiences of nearly 2,000 people affected by dementia.

The wellbeing of unpaid family carers who are often so vital in supporting people with dementia is also critical. Caring for someone living with dementia can be positive and rewarding, but it can also be extremely challenging. The existing provision and accessibility of respite care and services for carers is wholly inconsistent and insufficient. A recent Alzheimer’s Society survey, as part of our report on post-diagnostic support Left to Cope Alone, found that two thirds (68%) of survey respondents were not receiving carer support. Carers do a superb job, and often they are keen to continue to do so.

As a society we have recognised that the state has a role to play in providing extra assistance to them to ensure they can continue to fulfil those roles, or ensure there are appropriate safeguards in place if they are no longer able. But we mustn’t take carers for granted. Supportive words are welcome, but these must be backed by action and appropriate funding to sustain that action. The Government, therefore, must outline what its plans are for carers beyond the £25 million over three years allocated to pilot respite initiatives.

With so much still to be done, Alzheimer’s Society will continue to work to ensure that we create a health and social care landscape that has people and personhood at the heart of it. This new paper represents an important piece on that journey and one that will, hopefully, catalyse further debate and action surrounding the importance of personhood, personalised care, and dementia.

Morgan leads the policy direction for Alzheimer’s Society’s flagship Fix Dementia Care and Cure the Care System campaigns. He also played a key role in the Society’s work on the impact of coronavirus on people affected by dementia.

He has held a number of roles at Alzheimer’s Society since 2016, including at Alzheimer’s Society Cymru influencing Wales’ first ever dementia strategy.

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