The Dementia Timebomb

A thought-provoking article from today's Oxford Times on the 'dementia timebomb' for the county.

With a headline of 8000 people in Oxfordshire to have dementia by 2016 and a cost of £20million a year currently, it outlines some of the planing that NHS Oxforshire is undertaking. It also includes comment from a widower who had cared for his wife with dementia and his sense of the financial burden falling on them as individuals.

What is striking is how many of these 'local' articles are appearing around the UK, around Europe, in the US, in India, in South Korea and so on - wherever there is an ageing demographic and a growing demand for support for the increased incidence of dementia which is the unfortunate corollary of a population living longer.

A common theme is a growing recognition that the great unsaids about dementia care need to come out into the open - how little attention is paid to diagnosis, the unreasonable and unbearable burden placed on family carers both emotionally, practically and financially, the provision of mostly poor or inappropriate care for people with dementia, the need for financial support to local health bodies (although with the caveat that they should have targets for spending this to ensure the finances are actually spent on dementia care.....) etc etc.

While these remain localised and atomised articles, very little pressure will be placed on national governments to deal with this professionally and startegically. There is also a whole host of research modeling the costs of informal and formal care for dementia and showing how much of this burden is borne by the individual and their families unlike for other terminal illnesses. None of this ses to be joined up in media and political discussion.

It is time to pull the curtain away from this charade and to make real plans which are sustainable both financially and socially. we need to move from the rhetoric of 'cost-saving' which actually encourages short-term thinking to long-term evidence-based planning which sees this issue for what it is - a major challenge for our various societies not just in the future but now....

Supporting Those Who Care

Sitting at home with a wretched cold today (BTW before my mother's descent into dementia I was rarely ill but have been felled by infection after infection over the past 18 months...) I have been hearing John Suchet talking movingly in various radio and TV interviews about his wife Bonnie, who has dementia and the struggles he has faced to come to terms with grieving for someone who is still there.

Some things really stand out from Mr Suchet's interviews, not least the strong message that dementia is an individual journey which resists the categorisation of a rigid and inflexible system. For example, his wife performed well in the original cognitive tests and it was only because of a further incident that a full battery of tests probed further to confirm a diagnosis. Likewise, my mother has consistently 'passed' these tests as a result of her 'pre-morbid intelligence' and we have had to fight at every stage for a more bespoke recognition of her individual struggles which don't necessarily fit into these templates.

I was also struck by the level of support he had received and how this had enabled him to support his wife and to cope with the pressures. I have never had any contact with Admiral Nurses and we have been struggling by ourselves throughout, so I had a quick look at Dementia UK's website. I was suprised to see that the NHS Foundation Trust which has been overseeing my mother's care since August 2008 actually has an Admiral Nurse service. This has never been flagged up to us by the Trust and how I wish we could have had the benefit of a nurse like Ian who has been Mr Suchet's bedrock, emotionally and practically. This lack of proactive connnection and information provision shows how much is thrown back onto individuals to find out themselves and how much this kind of support is ad hoc and contingent on a lucky conjunction of a supportive and informed care team. This kind of support should be a standard - if not provided within the NHS then at least with the NHS and Social Services team having a duty to provide a checklist of support of all kinds available for the person with dementia and those who care for them in all senses.

Physical Execrcise for Communication and Autonomy

A couple of interesting news items from the world of dementia care showing the importance of the physical for general health and for dementia patients to retain communication and autonomy.

Firstly, in south-west France a physical instructor, Patrice Labaye, is to deliver specialised sessions for people with dementia. He explains his motivations as helping the participants to develop alternative forms of communication, verbal or not, to help them remain as autonomous as possible within their everyday existences. Such a simple foundation, but one which at least in this corner of France is being translated into real provision of opportunities for people with dementia. http://bit.ly/diHyrz

Secondly, in Mumbai's only day centre for people with dementia, a daily programme includes yoga, music and pets in its everyday practice and care. As well as this kind of provision, the centre is designed to reflect the realities of the lives of families caring for people with dementia by looking after the elderly during the day to allow their families to continue to work. http://bit.ly/9cSAlW

Although in both contexts such care is certainly not available to everyone with need, they present a very different social and care context than that available to my mother for example. Our options revolve around my either working and my mother living in residential care, or my giving up work to become a full-time carer for my mother which is simply not a possibility. Further, I have been arguing now for 18 months that physiotherapy would be helpful for my mother but this is not available within her package of care. Apparently the multi-disciplinary team 'leading' on my mother's care do not consider this a fundamental for any aspect of her health - physical, mental or cognitive.... For the moment, for my mother and many others like her in the UK, such stories remain so far removed from not just the daily realities of her care but also the framework in which that care is considered that they might as wel be mythical tales from a non-existent Nirvana.

Malta opens Dementia-Friendly Residence for the Elderly

An interesting story from the Times of Malta today. The Prime Minister Lawrence Gonzi yesterday opened a new extention to the St Vincent De Paul Residence for the elderly in Luqa designed explicitly with the needs of resiednts with dementia in mind.

Walls are colour-coded to aid orientation and doors and beds have photographs attached to them to make the personal links easier to establish.

The block is part of a broader commitment by the Maltese government to support the elderly, including a suggested model for supporting people to remain in their own homes, and communities, during the day, with access to communal residences at night.

Reading this from the UK, two things really stand out.

One is the positive language about the elderly and dementia patients. Parliamentary Secretary for the Elderly, Mario Galea said that "I think that, in future, all homes for the elderly should be dementia-friendly," while Prime Minister Gonzi commented "We need to build on this culture of respect and appreciation towards the elderly... who are today reaping the benefits of the work and sacrifices made throughout the years." Of course this is political rhetoric, but to anyone based in the UK and used to the political rhetoric associated with the elderly there is is shockingly positive.

This kind of conceptual re-positioning of the debate is crucial to challenging the stigmatisation and invisibility of the elderly and dementia in particular within policy and practice. Will David Cameron, Andrew Lansley or Paul Burstow come out with this kind of approach?

Second, is the fact that this design is based on the innovative research from the University of Stirling's centre for dementia research. The UK is clearly a leading light in theoretical research and this is starting to have some 'trickle-down' effect in other places. Although Stirling offers training, the lack of a coherent framework for dementia to be prioritised within UK PCT budgets and priorities remains the elephant in the room.

Without a fundamental shift in approach among both the political and health service leadership, this kind of care will remain a Nirvana for the majority of elderly (and non-elderly) people with dementia in the UK who canot afford access to the small number of private homes who lead on best practice in this area.

http://www.timesofmalta.com/articles/view/20100524/local/colours-photos-make-life-easier-for-dementia-patients

Snapshot Number Five - Increased Distress and Decline but no support

The same day I return to the south after visiting, my mother has called one of her best friends and told her that I have come, thrown away all her food and filled her freezer with out of date food she will not eat. She is almost hysterical and asks her friend to go and get her some food as she has thrown all the food I bought away.

Her friend phones me that evening to say that these kind of calls are increasingly common and that she is so worried about my mother she is going to try to take my mother to the doctor’s surgery. My mother has apparently been telling her friend that she doesn’t want to carry on living, she is withdrawn from her usual social and volunteering activities, and she seems increasingly fixated on an imaginary immobility. Of course she had had a problem with her leg but it is healed and she has no difficulties walking. She keeps saying that she is ill like my father had been before he died some years ago despite the fact that their health needs vary dramatically.

A week or so later, despite the fact that no one from the Older Persons’ Mental Health team has contacted my mother, the urgent referral results in the appearance of Social Service support in my mother’s house three times a day, of course means-tested and provided at cost to my mother. The records of these rather desultory visits show a steady decline and increased mental distress – and I find this also on visits and conversations with my mother. We collectively wait for the Mental Health team to find time to visit my mother and assess her distress and needs. Having no contact there, I keep phoning my mother's GP who informs me they are now in the hands of the mental health team.

This is the true face of both mental health support and the location of dementia diagnosis within the Older Persons Mental Health Team in so many PCTs. My mother's clear distress and also the early warning signs of dementia are simply lost as noone can even make it to see and to engage with my mother apart from her friends and me.I am later told that an elderly woman living at home and showing such symptoms is an urgent case for health care intervention, but when my mother is that person no urgency is apparent.

Communal Approaches to Dementia Care in France

In the West of France, in the town of Couëron, the earth is about to broken for the building of an innovative establishment for the care of people with dementia.

The development raises a number of interesting contrasts in the implementation of the UK's National Dementia Strategy and France's 'Plan Alzheimer'.

First and foremost is that it is the commune of Couëron which is leading. The development is not situated within a private 'care' business but within the everyday context of a community thinking about the care and intergration of all its residents.

Secondly, the development has been designed following the conceptual lead of two specialists in older persons' health and care, with an embedded remit to focus on the experiences of older people, including those with dementia, as part of a community. As a result it is located and designed to bring together residential, respite and day care and it will be both visible and connected to the surrounding community.

Thirdly, this approach, based from the individual experience up rather than the creation of routine and 'establishment' down, has led to a residential complex of houses rather than 'rooms' off institutional corridors, and one which prioritises individualised care. Imposed routine for the benefit of the organisation rather than the individual is understood to be limiting and restrictive and planning for the development takes this as its foundation.

Fourthly, the residence will also be a site for research into best practice, bringing together the often separate worlds of academic and clinical research and the realities of care.

Meanwhile across the English Channel, the new UK government talks about yet another commission into social care, ringfencing dementia research funding but not insisting that dementia funding already supllied under the National Dementia Framework is actually spent by PCTs on dementia care. A quick glance to a region well known to many of the Cabinet I am sure from their holidays en famille would show how the French are at least beginning to change rhetoric into fundamental changes in the delivery of care and support for people with dementia.

In our tortuous journey - still ongoing - through the options for care for my mother, we have never come across such a radically simple, communally owned and located, option. For my mother to acces such care, we would in turn need access to a bottomless pit of our own funding (£4000 a month) unless she becomes one of the lucky few fully supported by the NHS. Our experience of this process is not hopeful.

So I will be looking into the ferry journey to France and will hope my mother's journey into her past will allow her to access her schoolgirl French. At least then she would have some level of care based on seeing the person and her place within a community, not excluded from it.

http://www.ouest-france.fr/actu/actuDet_-Un-etablissement-Alzheimer-en-projet-a-Coueron-_40879-1382984_actu.Htm

The Long-term Costs of Not Acting on Dementia Care

"If we were to prove capable of delaying progression of the disease, more Americans would actually have the disease by 2050 than would otherwise be the case, but care costs would be cheaper."

The Alzheimer's Association in the US has produced a hard-hitting report on the future of care for Alzheimer's and other forms of dementia. "Changing the Trajectory of Alzheimer's Disease: A National Imperative" models a potential five-fold increase in the total costs of care for Americans with Alzheimer's from 2010 to 2050.

However, the report argues that while ultimately a focus should be to find a cure, in this timeframe more modest interventions to delay onset and progression should be both considered and implemented for individual care and to limit the economic burden.

Many reports of this nature are now being produced - in the UK, in continental Europe, in the US, in South Korea for example, all home to rapidly ageing societies. However this concrete modelling and prioritisation of early diagnosis and thoughtful treatment to slow progrees has not made its way into political discussion of this pressing health and societal issue or into mainstream health and social care practice. These remain mired in muddled discussion of social and health care with little actual focus on a demonstrable positive impact on an individual's life experience. They also ignore the true economic costs in the long-term of not dealing with the twin elephants in the room - the exponential increase in dementia sufferers among ageing populations and our collective dehumanising of these individuals and their illness.

Dementia care needs the equivalent of the Stern Review for climate change - a summation of these important pieces of work to break down the current orthodoxies of short term financial planning and hiding of the true costs in the individual and family budgets and in informal care. As with climate change, the true costs of NOT acting in the long term need to be brought into the glare of media, political and policy scrutiny to bring wider understanding of the unsustainability of the current approaches for individuals and societies as a whole.

See and Hear The Person Within

More and more evidence is emerging that music helps people with dementia and Alzheimer's to recall and to communicate.

Recent research from Boston University (http://bit.ly/bS1qRt) shows that when information was communicated through song, people with dementia were able to remember far more than when the information was spoken. Those of the same age without dementia experienced no advantage in terms of recall.

Dr Eva Götell in Sweden has been leading a team for many years focusing on exactly this isssue - see www.dementiacaresinging.com.

So the evidence is stacking up, yet still this mode of two-way communication is not embedded in daily care for dementia sufferers. If it is present, it is peripheral, or optional, or a special intervention depending on the energies and vision of volunteers. Given the runes for NHS funding following this week's change of UK guard, PCTs are unlikely to follow the innovative example of Sefton NHS - providing free music workshops this summer for those referred with dementia. Such a creative approach would allow PCTs to partner with other - equally squeezed, local agencies such as Arts and Community officers.

Raising awareness among caregivers - formal and informal, in residential and nursing homes - would help the growing numbers of people with dementia to retain their ability to express and communicate their personality, needs and thoughts. A person with needs for alternative language, or sign language communication, would be provided for as a matter of course.

The simple step of singing out would also make us all remember that people with dementia are first and foremost still individuals, and for us all to see, and hear, the person within.

Snapshot Number Four 'Urgent' Mental Health Referrals

The next morning, I get the ‘milk-train’ back to London and am at work. It is lunchtime and I get a call on my mobile showing my mother’s number. Of course I pick up, with a slight jump of the heart, and I find my mother’s neighbour is on the end of the line. She sounds agitated and tells me that once again the paramedics are at my mother’s house.

My mother has called her neighbour in near hysteria, after first calling 999, saying that she has fallen down the stairs and needs to be taken into hospital as she is unable to move. She is saying this as she is walking at speed around her front room. I can hear my mother’s pressured speech and crying in the background as the paramedic comes on the phone to me. It is a repeat, almost word for word, of my conversation with his colleague several days previously.

They have run checks on my mother and can find no evidence of any damage, fall or fainting, they will take her to hospital if she insists, but indicate she will likely be returned home almost straight away. I speak with my mother who is calming down now and we agree she will stay at home and I will speak with her GP again. Her GP confirms an ‘urgent referral ‘ has been made for my mother’s mental health, but no one from the Community Mental Health team appears at this point and my mother’s mental health is left to its own devices.

No-one at this stage is even thinking or talking about any kind of dementia, and our efforts are focused on getting my mother some mental health support as an apparently priority case of an elderly woman living independently.

Snapshot Number Three Some Early Signs

I arrive at my mother’s flat late in the evening having got the train north from London after work. Although she knows I am coming, there is no food in the flat and she barely registers that I have arrived, tired and hungry after a long day’s work and a long journey, before starting to tell me, while crossing the room, that she is completely immobile. She is irritated, critical, argumentative, challenging.

My mother’s mental health has always fluctuated (it will later become painfully clear when I see her medical records how she has been let down throughout her adult life by Mental Health services) and I could not honestly say she has never been described with any of those adjectives before, but this is different, in particular her outright insistence that she is immobile, despite the visual evidence to the contrary. I am shocked and worried but it is hard to pinpoint what exactly is the matter. My mother is behaving like an extreme version of one element of her personality. I am also worried that she seems to have lost weight, and that very unlike herself does not seem to be eating very much. For those who know my mother, the idea of her not enjoying cake, biscuits and everything that her diabetic diet is not meant to allow is inconceivable, she has always been unable to resist.

The next day, I try to persuade my mother to come out as she tells me that she has not left the flat for some time and is depending on her neighbours to visit and to shop for her. I say, crossly and tiredly (I am not very proud of myself in retrospect of course) that she is being ridiculous on all fronts. She can walk, she is not immobile, she does not need her neighbours to go shopping for her. She is an active, independent woman who can look after herself, what is she thinking?! She replies equally crossly that she is not going out, and also that she has given her pension card to a friend for 'safe keeping', so I go to the local supermarket and stock up her freezer with food for her to heat up before I leave for work again the next morning and to call her friend.