Dementia-proofing future care

(Text of an article published in Caring Matters Magazine, July 2020)

Dementia as we all know is a crippling illness. It robs people of so much in their life not just their memory. It creates a world narrowed down in on itself where routine and familiarity, pattern and predictability become all the more important. It is a world where loss of function and ability has to be matched by caring support, maintaining relationships and adapting communication.

Lockdown has forced change upon most of us. In the care sector it has brought about undeniable challenge and trauma not least in our care homes which have witnessed the distress of deaths at a rate of frequency that we have been left silent in its wake. In our communities the stripping away of packages of support by councils and the ending of contracts by private individuals have left many individuals, organisations and staff vulnerable.

There will be time and space for much reflection on our pandemic response and actions as a whole society, as politicians and scientists, and as health and social care systems. But I hope that at its core that such a reflection includes the experience of those living with dementia. Statistically we know that over three-quarters of those who have died as a result of Covid19 have been individuals over the age of 75, and that a sizeable majority of these have been individuals living with dementia and frailty. 

The story of Covid19 in our country is the story of dementia. Have we acted in a manner that has protected the most vulnerable or have we been expedient and mis-calculating in our efforts to protect the majority at the expense of the life and care of those with dementia? It may be too early to answer that but personally I consider our response to those with dementia has been wholly inadequate if not deadly.

We live in a country which enshrines human rights as the basis of our interactions one with the other. Even in times of national emergency and crisis we agree that there are fundamental behaviours and actions which are necessary to take, and which underpin our response. Conversely we acknowledge that there are approaches and decisions which are deemed unacceptable because of their contravention of the basic rights which we have come to hold as fundamental to what it means to be human and who we are as a community and nation. For people living with dementia upholding their human rights should be the barometer of the care and support they should ordinarily expect. So, any human rights analysis of our response to Covid19 should explore the impact of our actions for those people living with dementia.

In that regard how have we done? Have we enabled the preservation of life at all costs or has there been an expeditious decision taken to prioritise some more than others? Has the overt policy and practice focus of preventing the NHS from collapsing resulted in a failure to adequately support the very social care systems (especially care homes) which are the mainstay of support for people with dementia? Have we so focussed on the need to reserve resource for the acute sector that we have drained local authorities of the abilities to adequately resource people being supported at home? Have we included and involved older people living with dementia at key points of decision-making and our Covid19 response, for instance in decisions around shielding?

Life in a care home under lockdown, with enforced isolation and social distancing has been viewed through the strict lens of infection prevention and control. But have we given enough serious focus to how it is possible to undertake such measures in settings which are non-clinical, non-institutional and personalised to enable them still to be familiar and homely?

Life for anyone receiving care and living with dementia during this pandemic has been brutal and hard, emotionally empty and traumatic. I am not using hyperbole but stating fact as I see it. We have instructed workers and providers to ‘isolate’ individuals whose very agitated behaviour often results in them needing to be active; we have expected from people who are confused and distressed a compliance which is wholly unreasonable; we have put our staff in masks in the midst of a community for whom recognition and remembrance are fundamental requirements of assurance and comfort, leaving many terrified by appearances. We have stopped using common spaces for people whose routine and pattern of behaviours have meant being in the same space and place, alongside the same people and doing the same activities had become for them the boundary of safety in their confused and conflicting worlds. And perhaps worst of all we have restricted visiting of family and friends, except in a few instances, which has meant for everyone their loss of the relational, of touch, physicality and presence.

The shame of so much of our Covid19 response as a society is not the shame of the care sector but an indictment against some politicians and strategists, against a fundamentalist approach to infection prevention and a failure to embed humanity and person-centredness in our implementation of lockdown measures. Covid19 has brought a challenge undoubtedly but it has shone a light on the failures of our care and support for people with dementia.

I believe that as we reform and reshape ourselves moving out of our immediate response to the pandemic and into a stage of restoration and reform that we need to do much better in the future than we have to date. We have to be better at balancing the human right to a quality of life with dementia over and against the right to the preservation of life. Our care homes hold in care the lives of thousands living at the end of their days, the vast majority with dementia. They do not have weeks, months and years for us to continue to deny them relationship and encounter, memory and engagement. In the future we cannot accept the frequent long-term imprisonment of citizens in the name of their own protection without their willing articulated agreement. Initial protection measures were undoubtedly proportionate and reasonable to achieve the legitimate aim of the wider preservation of life. Every week that has passed, with witnessed deterioration and disintegration of life, with increasing numbers wasting away not from the virus but from the experience of protection, has brought a toll which cannot be acceptable. We have to find a better approach than the adoption of the imperatives of a model of infection control and prevention developed for the clinical, antiseptic environment of a cold hospital ward into the spaces and places people are encouraged to call their own home. A care home is not an institution and we need to develop non-institutional responses. We cannot rip up carpets, remove personal possessions, strip rooms of individuality, replace comfort with clinical compliance – simply in the name of protection. Life is more than existence – it has to be about quality, meaning, purpose and individuality.

Coronavirus will be with us for some considerable time. We have to ensure that our ongoing response to its threat is based on an understanding of human dignity and not solely one of scientific dictate.

Dr Donald Macaskill