Beti George calls for improved care for those suffering with dementia.
Beti George is a respected journalist and broadcaster is a carer for her partner of more than 40 years, the writer and rugby commentator David Parry-Jones, who was diagnosed with Alzheimer’s in 2009. In the annual IWA Eisteddfod lecture being delivered today in Meifod, Beti George will weave her first hand experience with calls for policy change. Here she explains some of the issues she faces as a carer.
You can’t open a paper these days without a feature on some aspect of dementia – and the social media is overloaded with info about dementia and the latest on treatments – which more often than not raise false hopes. Opinion polls quote Dementia as the most feared condition for those over 50.
But what about understanding dementia – that has changed very little, if at all. Maybe the word dementia has replaced memory loss – but I know of people who refuse to go for an assessment because the invitation came from a mental health centre. “I’m not bonkers” they say.
In Scotland the Government has put money in a support system of link workers. After diagnosis a link worker is designated to everyone and is guaranteed to stay with them for a year. To help them to understand dementia, to connect them with bodies who can help them, to help them to plan for the future, including financial implications.
I must admit that there are signs of awakening in our own government – not before time. £800,000 for 32 support workers to give support and advice face to face. With 450,000 living with dementia in Wales 32 doesn’t seem a lot, and certainly no one has approached us yet.
It’s all very well for me to make noises and complain. But what can be done? What kind of support does David need – and for all in his situation – although one can’t put every one who has dementia in the same basket, there are at least a hundred different types of dementia.
But as I see it we need a revolution in the care sector. Forget the traditional care given to frail elderly people – the needs of people with dementia are radically different.
Some argue that a social description would be as if not more effective than medicinal prescription. To have poets and artists and musicians to stimulate the mind and brain. Prof Bob Woods has had international recognition in leading the team in the Psychology Dept of Bangor University in this field. And I’ve seen with the Pontio and the University’s projects how it can really improve the lives of those with dementia. Instead of sitting around the room looking at the TV, they become involved and become alive once again. And I have also witnessed David’s response to the poet John Killick who specialises in this field. David was speaking about the experience for days afterwards.
Why not a weekly session of physiotherapy or keep fit to get those muscles going? What is that but care?
And why do we have to divide care into health and social? Care is care whether it is caring for a baby, a young person, a middle aged person or the elderly. And need is need be it a health or social; Why does it have to be divided?
And that is what is a mystery to me. The attack on the brain by cancer is treated under the NHS. The attack on the brain by amyloids that causes dementia is labelled a social issue. If you have cancer of the brain the treatment is free. If you have Dementia you have to more or less pay for everything – apart from the drugs.
David has the attendance allowance and I’m grateful for that – at least it will pay for about half of the care that David will have this week as a domiciliary carer will come in every morning. I’m ever so grateful to David’s daughter, relatives and friends who will see to him the rest of the time. Without David’s children life would be much more difficult for me. I’m lucky. So many have no family or maybe family living nearby.
I know that the political will seems to be to join Health and Social Services. But it’s difficult they say. For one thing, people instinctively want to hold on to power and stature – and a well paid job.
Ideally, reducing the number of Local Authorities would make it easier to cooperate. I fail to understand why this is not at the forefront of thinking as to how many LAs should there be. There are 7 Health Boards. It makes sense to me that it should be Seven LAs. Both Health and Social services could then cooperate and in the not too distant future become one service – without the division. It makes sense.
Last year a commission was set up by the King’s Fund to look at the future of these services in England. Under the leadership of the business economist Pat Barker, the came to the conclusion that action should be taken now to combine the Health and Social Services. And that the needs of people in 1948 when the division was made, were totally different from today’s needs. And that is mainly due to people living longer and developing dementia. They didn’t live long enough in those days to develop dementia. And more importantly in a time of dire cuts combining the two services would not mean that the budget required would not be impossibly higher than the present day NHS budget.
I can hear you say how on earth is Wales going to cope with the future care demands. We’re yet to see the devastating effects of cuts that are still facing us. Who would wish to be the minister for health and social services!
I believe that combining the health and care budgets would save money. So much emphasis is put on Dementia friendly or supportive communities. And they are working well in some areas. And there are people who give their all to make sure they are effective. And dementia friendly places are to be welcomed by those with dementia who are still active – whether they go to the shops or post offices or cafes. David can’t participate like that any more. And I would argue that he is in the majority.
There are so many reviews and reports being commissioned. One is being carried out now for the Commissioner for Older people. The sad truth is that people who’ll be approached to valuate services are those who already receive them. But the vast majority of people with dementia are isolated and under the radar and whose voices are never heard. Who’s going to advocate for them?
We have to admit that we can’t rely on the state for support any more. and that is where Wales should be at the forefront of dementia care. We’re a small country of close knit communities – less so than in the past I suspect. But still we like to think that we are a nation of carers who look after each other aren’t we?
The chapel, where they are still open, has always been an important – a social as well as religious centre. And I’ve seen an example in Denbighshire people with dementia are offered support and comfort by members of that chapel. And the Welsh language is given huge respect. In Cardiff chapels look after the homeless. They may well like to help people with dementia.
Schools can help – I’ve seen examples in my area of Cardiff – where young people and those with dementia feel the benefits.
Merched Y Wawr I’m sure would relish working with Welsh speakers . And the WI who are so active in all areas.
Very importantly, Wales is at the forefront of many research projects. There are exciting developments at Cardiff University. The research at Bangor University has had international recognition. And in Caerphilly an important project following the lives of a large number of men has shown that living a healthy life lowers the risk of developing dementia.
But our government must review their dementia vision and plans for the future. The present vision is not fit for purpose.
All that is about care for the one with dementia. Now I’d like to say a word or two about caring for the carer. And that means Respite – which used to be available when local authorities would pay for beds to be put aside in a care home specifically for those with dementia, so that the carer could have respite. We know that the LAs are having to cut back on services of all kind and this service has long since disappeared . So I appeal to our government to at least discuss the needs of the carer for Respite. If the carer isn’t cared for, the responsibility for caring for the one with dementia will be the state’s, which will be far more costly.
So let’s be confident and show the world how to really care for people with dementia. It will touch all of us in one way or the other before long unless we tackle it now. We can no longer afford to ignore it.
There are more and more ways of helping people with dimensia using exercise , diet ,NLP etc. . These are really helping suffers .Swimming for example is excellent , as is gentle exercise Also it needs to be noted this is not just an “old” peoples problem- more and more people are showing signs in their early 50s -some even before that.
Also there needs to be more focus on carers – they need care too and training and respite. NHS ,and Family rely heavily on these unpaid carers . Their welfare is crucial and as they are there 24 hours it makes sense to give them training in best ways to work with dementia patients . Resources are vital and places where both can get away that are friendly to the condition are essential, there are some around but these are in the private sector and pricey. There is a death of respite centres that give carers relief too .
There’s a Who song lyric that says ‘ …hope I die before I get old.’ Dementia must indeed be ‘the most feared by the 50+ ‘. Being of the generation of people who remember the Who, I do indeed fear loss of cognitive ability and memory.
Dementia is a pretty ‘scary’ word with all sorts of scary connotations. Perhaps one minor way of reducing the fear could be to call it by a better name. I suppose ‘memory loss’ is OK but that doesn’t really convey the full implications of this degenerative condition. It should also be re-classified as an ‘autoimmune’ disease along with cancer so that NHS eligibility can be accessed properly.
As the author implies, most of the actual ‘suffering’ may be experienced more by the unsupported ‘carer’ because the patient themselves may not be fully aware of their own condition. Dementia patients often do not recognise their own families and friends and this really causes horrific problems because carers are not appreciated properly for their care by those that are supposed to be closest to them and are those that really care emotionally rather than as a professional.
I have a question. The Welsh daffodil is supposed to contain an ingredient that helps treat / delay the condition. Has anything come of this? Alzeim, from Talgarth near Brecon, farms daffodils for a compound called galantamine, which slows the progress of the disease. http://news.bbc.co.uk/1/hi/wales/mid/8007175.stm
My mum has Alzheimer’s and it is plain little is geared up for them. The carers – who do a terrific job – simply do not have the time to deal with patients. But that is what they need more than anything – time.
Good article – thank you. Big time bomb here with a subject which too frequently touches many. With longer life expectation and divorce now more prevalent we have more dementia patients on their own with no partner to help throwing the burden onto wider family or the remnants of the state sooner. Also, if/when the individual moves into the phase of requiring residential care they are potentially going to be there for a lot longer. Many people are self funders because of property but generally low property values here means that this cash is rapidly used up also pushing the load onto the state sooner than perhaps in the SE of England. Then of course we have higher proportions of the elderly here than in many other areas of the UK because people like to retire somewhere nice like Wales. I doubt whether Barnett factors that lot in. The quality of care available is extremely variable so many people take on the role themselves when they might actually be more economically productive in their original day job – bad thing for the nation. Totally agree with the author – an holistic view needs to be taken to better grip this problem. Perhaps politicians will make the connection between the 500,0000 (voting) UK dementia patients, their even more numerous (voting) 50 something carer and family member base and the need to overhaul current arrangements.
Beti George’s words are so true. After diagnosis the Dementia sufferer is sent away. In my Mother’s case, no Dementia Nurse, or Memory Clinic. In some parts of England there are Admiral Nurses, who are specialist Dementia Nurses, who guide & support the sufferer & the carer on this awful journey. There are approximately 135 in England, none in Wales. There are poor Respite facilities in Mid Wales & long waiting lists. There needs to be FULLY TRAINED staff in these places & there needs to be enough staff. What can be done to help carers stay in work? Day Centres could have longer hours, instead of 10am to 3pm, why not 8.30am to 5.30pm? This could mean less carers would have to claim Carer’s Allowance, thus, reducing the Welfare Budget! It is very hard to get information, at a time when the carer is exhausted anyway & yes more support & advice needs to be brought on board to keep loved ones with Dementia at home. Beti George is quite right, to say other illnesses are NHS funded, but Dementia is not. Other illnesses also have SPECIALIST Nurses, & Dementia does not, at least not everywhere & not in Wales. More Specialist EMI Units are needed, more training is needed across the board, longer hours in Day Centres, more small local hospitals could be utilised, instead of closing local hospitals. More support & advice for carers & we need Dementia Nurses.
Interesting article – my mother was a childhood friend of David Parry Jones. She was evacuated from
Essex to Cardiff and lived next door to him. Their parents kept in touch for years and we used to tease her when he appeared on TV.
Like David, mum also has Alzheimer’s. A year ago we made the difficult decision about moving mum into a nursing home. I visit most days. I try to see the positive side of caring for someone you love. It is a privilege and we do have fun together and talk openly about everything. Mum loves reminiscing and we often talk about her time in Llandaff during the war