Living with dementia in Craven – a personal view by David S Johnson.

THE world we live in today is beset with problems, global, national and local - the cost of living, climate change, and – so we are told – high levels of immigration? If stopped in the street, though, how many would cite dementia as a key concern? How many of us really know what dementia is, how it affects sufferers, how it affects loved ones left behind?

It is often said that it’s a mental illness, that X keeps forgetting things, keeps saying the same things over and over, and gets confused. How many of you the readers have had any direct contact with a dementia victim? How many of you know someone whose partner or parent is in a care home with Alzheimer’s? How many people assume it afflicts only ‘really old’ folk? How many people out there even care?

Here in Craven we should care. Over 12 per cent of Craven’s population is over 65 and by 2030 it is expected to increase by 23 per cent. In 2018-19 all of Craven’s surgeries reported a higher incidence of dementia than the national average and our over-65 population is also higher than the average.

Nationally the number of people with dementia is predicted to rise from 900,000 to 1.5m by 2050. I do care – deeply – because Alzheimer’s has totally changed my life over the last two years, not because I have it but because my Better Half is cursed with it.

I have been looking into dementia and much of what I have learned and experienced distresses me. For example, for every one clinical dementia researcher there are four in cancer research.

In 2021 across the country only 61 people took part in clinical trials in dementia; in cancer the pre-Covid figure was 67,000 per year and during Covid 27,700. This is a shocking disparity.

In 2023 the Alzheimer’s Society reported that dementia research suffers “severe lack of funding”, and very few early-career researchers can get into this field because funding isn’t there. This is equally shocking.

Also distressing to me is the attitude of those friends and family members who have ‘disappeared’, who don’t want to know, can’t cope or ask silly questions like “is she any better?” Of course she isn’t – no one recovers from dementia. And let’s get something else clear: dementia is not a mental illness. It’s a physical illness whereby proteins attack and destroy brain cells causing loss of cognition plus mental and physical decline. Why this happens and why it affects this person and not that are still unknown.

Since November 2021 my partner has been in Anley Hall in Settle where I live. This is one of 12 care homes in Craven. Such is the demand for care that Anley monthly receives on average four requests from people with a relative in need of residential dementia care. Anley’s management team faces several challenges.

At the top of the list is finding staff willing to work in care. It’s a nightmare and, despite repeated advertising in various media outlets, local people do not come forward.

At Anley over two-thirds of the care staff are from overseas – mainly India, Romania and Nigeria. In this country the word ‘immigrant’ seems to have become a dirty word, and government measures announced in December 2023 aim to stop care workers from abroad bringing their spouses and children – how inhumane and uncaring is that? – and the charge imposed on immigrants to access the NHS is to rise by 66 per cent.

Decision makers argue that the five million people in the UK who don’t or won’t work should be steered (forced?) into shortage jobs like care but it is obvious to me the decision makers don’t have a clue what working in care entails. It isn’t just a job, it’s a calling. It needs a certain kind of person – patient, caring, compassionate, calm and understanding.

I have the letters Dr before my name: I am not a medical doctor but I do have personal experience of working in various care situations in this country and Africa so I feel justified in speaking out. Every single carer at Anley who came from beyond Europe was already a qualified carer before applying to come here. Most of their spouses are also in work, unless they have very young children. They are not sponging on the rest of us or taking our jobs away but are contributing to the local and national economy.

If they are effectively discouraged from working in the UK, who will staff our care homes? Or will more homes be forced to close? Then what? For its 51 residents Anley employs 64 carers and nine nurses – two-thirds of that number is over 40 which is a lot of skilled people to conjure up from nowhere if potential or present immigrant carers feel unwelcome in this country ... and Anley is but one of thousands of care homes across the country.

So, pundits argue, pay more to attract local folk. How, given that councils are already struggling to provide statutory services and many are in danger of declaring bankruptcy?

Another challenge facing the care sector is tackling ignorance about dementia, getting more people to take an interest and engage with the world of dementia to reduce levels of fear among the public. I can only speak of Anley Hall but they have made real efforts to bring people in as casual visitors to see what it is like and to understand that residents are not gibbering monsters but are still people.

Every Thursday morning anyone can come to a coffee morning and enjoy the cooks’ wonderful baking; Anley is also trying to establish a mothers and toddlers facility to increase awareness and to bring young and old together.

Furthermore, earlier this year the set up a weekly Resident Supporters’ Group where relatives and key staff get together to talk things through: I have found this of great value in my journey.

No one can begin to imagine the horrors of dementia until it smacks you in the face, nor the constant headache care homes face trying to recruit staff.

I urge more care homes to adopt Anley’s open-door policy, I urge you the reader to pop into your nearest home to see how it works, and to contact your MP (as I have) about the proposed drastic changes to the immigration system.

Since this article was written David's partner passed away on December 21 after a short final illness.