Whose life is it anyway? Challenging the absence of dementia voice
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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. Dr Donald Macaskill, CEO of Scottish Care kicks off this new blog series…
The pandemic painfully illustrated the failure to listen to the voice of those living with dementia. Any future must be rooted in learning to listen and hear.

Those of you of a particular generation might well remember the Radio 4 weekly show ‘Does he take sugar?’, which ran up until the late 1990s. It was a disability current affairs programme whose title derived from the imagined scenario where someone instead of speaking to the person with a disability spoke to their support or carer in asking that most fundamental question for all tea or coffee lovers. The presumption was that popular attitudes and behaviours treated the person with disability as less able, less intelligent and incapable of making a decision or speaking for themselves. Over the last few months, I have thought of what the equivalent might be for those who live with dementia.

I suspect that one of the insights of the whole Covid-19 experience will be the extent to which we will come to recognise the painful truth of the fact that we failed to even attempt to listen to the voice of people living with dementia, never mind to seriously hear and take on board what was said. It might be argued that an emergency response necessitates a certain lack or limitation of engagement, consultation and involvement but months and months, years down the line I suspect the same sense of presumptive behaviour still lies at the heart of the exclusion of the voice of dementia from key decisions which impact on the lives of those living with dementia and their families.

The failure to really include and involve has been most evident in the world which I inhabit, that of social care, whether that be in terms of residential and nursing care homes or with regard to care at home and housing support services.

People who live with a condition such as dementia are many and varied and there is no one-size-fits-all approach to their support and care which is ever going to be wholly adequate or appropriate. And yet that is precisely what the interventions during Covid-19 have resulted in. The ways in which I believe the entire system has mis-stepped are many, but would include some of the following.

We developed guidance and rules which required individuals to be isolated should they contract Covid-19 and especially in the early days of the pandemic we limited the ability of people living with dementia in care homes to associate and connect with others,  both fellow residents and family and friends. There was an assumption that it was possible to isolate an individual in their own room in order for the diseases to be managed for the person and indeed for their fellow residents in a care home. This may have been something which worked in an infectious disease unit in an acute hospital but it was never seriously going to have any chance of success in an environment which was someone’s own home and in which they had been encouraged to have freedom and movement.

We failed to recognise the intrinsically important patterns of behaviour which people with dementia, especially in its advanced stages, require and need; the vital importance of routine and of environmental familiarity; the signposting of the day with key signifiers through persons and events; the criticality of connection and communion with others.

The untold damage that a dementia insensitive approach to infection prevention and control has resulted in is probably incalculable. The worst example of this was when so-called infection experts instructed care staff to remove objects from a resident’s room seeing them as carrions of infection rather than recognising them as mementoes of memory, portals to recollection, objects of solace and trinkets of comfort. To overturn the secure familiarity of a resident’s room and turn it in an antiseptic cold place effectively destroyed belonging and fostered disintegration and personal decline.

Then in our communities the virtual overnight withdrawal of support through care at home packages and especially the closure of day services had a crippling effect on the wellbeing of people living with dementia as patterns of routine and respite disappeared and left family and informal carers feeling abandoned and bereft of the support and regularity of paid carers, of contact and connection with others in community.

Whether in care home or in community the sad litany of examples of failing to hear the voice, to respond to the distinctive and special needs of people living with dementia, of recognising that alternative approaches were required as days went into weeks, weeks into months and years, all add up to an arithmetic of sad loss of life and unnecessary early decline.

As we move forward to reflect on what has happened and to re-imagine what any future response to a pandemic might be in care home and community, we must radically revisit the fundamental human truth and legal human rights basis that involvement, inclusion, giving voice to and taking account of, are critical in human community. We have massively failed to listen to those who live with dementia and have issued blanket guidance and presumptive requirements.

In re-shaping our future we need to discover a way of moving from a stance of ‘Does he take sugar?’ to one which asks the person ‘What matters to you? What do you want? How can we support you to be a citizen, in dignity and equality, free from discrimination in our response to emergency?’

If we do not urgently accept and own our failures and develop ways in which we can respond in dignity to crisis, then the invisibility of dementia and the ability of people to stigmatise and stereotype each person who lives with the disease will only continue to grow.

As advocates, workers, leaders, and people who live with dementia we must find a voice which never again will be silenced into the acceptance of the unacceptable.

Dr Donald Macaskill

Dr Donald Macaskill is the CEO of Scottish Care, the representative body of independent sector care providers in Scotland. Previously he ran a human rights and equality consultancy and has a special interest in bereavement, grief and loss.


If you have yet to read the new DCAN paper by Neil Crowther, just click here.

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