Threadbare dementia services

I read with great interest the humane and compassionate article in The Psychologist (December 2022) by Lewis McQueen, on supporting people living with dementia and their carers. It is true that carers and relatives are responsible for providing the majority of care, and are often faced with managing and coordinating complex needs. 

They also have to provide and organise all aspects of household life for their relatives, such as managing money, doing shopping, house maintenance and repair, cleaning, cooking and in particular managing healthcare and securing financial support for care.

Since retirement from the NHS, I have supported both my parents through dementia for eight years with my brothers and sister. It has required all our skill and knowledge and a huge amount of effort to keep them afloat – and still does.

Apparently, carers experience services as providing inadequate support. The only adequate support we ever received was with assessment some years ago; since then no information has been provided to us and certainly nothing specific to dementia or different types or experiences of dementia. We have had to fight for any financial support from the local authority, and feel they can always come up with some new excuse for not making any provision. 

If they are not devious, they are simply incompetent. Time and again, we have had to locate somebody in a service, work out what their job should be, tell them what their job should be, tell them how to do it and then see if they can give us any reason not to do it. The whole process is worse than adversarial.

I agree with Lewis that supporting carers to adapt to the process of caregiving as the symptoms of dementia progress should be an essential priority.

This would be easier if there were anything other than threadbare services. Our experience was that every time something changed in our parents' experience or behaviour, and we needed new advice, we had to make contact with services all over again and set up a new referral. By the time we were contacted, things had moved on and we might as well have come up with our own solutions. 

Lewis asked why professionals and services have not listened when carers tell them that they feel unsupported. This is not a matter of improving face-to-face clinical practice; I suggest that people feel unsupported because the services have been set up from the start to give minimal support, and this dates back at least to David Cameron's use of the metaphor of an impending 'tsunami of dementia'. 

He implied that the increase in dementia in the population was like a natural disaster, unpredictable and overwhelming and impossible to plan for. In fact the epidemiology and demographics would allow you to plan precisely what health and services needed to be built up, year on year. The metaphor gave him and following governments the excuse to shuffle off this responsibility.

Richard Millington
Clinical psychologist, retired