http://bit.ly/akzjw7 Visit the Dementia Fights Back facebook page. There are some super postings from Norm Mac there. He writes very eloquently about his experiences with dementia and the reactions of others. Some will bring you to tears, some will make you laugh out loud, all should make us remember that it's about the person...

'Little Nothings of the Everyday' which cut across the silence of dementia

A rush of articles from the south of France about the importance of music and arts intervetions in care homes, particularly for those residents with dementia.

In Montreal (Aude), a whole programme of arts, music and film has been implemented to bring care home residents in touch with their own memories and with the broader community. A series of music workshops have been run over a term by music therapist Jean-Luc Dragotto. Designed to stimulate communication, good mental health and to allow residents with dementia to reclaim a sense of identity and be valorised, the intervention has proved such a success that they will be followed by an multi-media artist and film showings about life in the Pyrennees.


Nearby, Perkusaintex is a programme of percussion workshops in St.Exupery run by musician Sylvie Blondel. Through the use of rhythm, Mme Blondel encourages residents, many of whom have lost much of their verbal communication, to find an alternative route for expression. This week, the group performed for the first time in public to an invited audience of relatives and friends in the care home. The concert included a specially-written piece "Il en faut peu pour être heureux" [This is what you need to be happy]

As Mme Blondel says, what is needed to facilitate this is actually very little - ces petits riens qui font le quotidien (these little nothings which make up the everyday) but which have such transformative effects for people with dementia. While in the UK we continue to debate whether or not we should be investing in such activity, the French at least understand the economic and social value of such interventions, which are not costly but do require creativity in care planning, budgeting on local and national levels and associated bureaucracy...

Memoriam - the power of art to express the individual nightmare and public invisibility of Alzheimer's

Yesterday at the fabulous Quilts exhibition at the V&A in London, I was brought up short in front of Michele Walker's astonishing quilt Memoriam, which she produced in 2002 as a testimony to her mother who had suffered from dementia.

It stands in the tradition of commemorative quilts and with its use of materials and imagery expresses both the chaotic and distressing impact of the loss of memory on the individual and their family as well as presenting a challenge to the lack of public awareness of this.

With its wire wool and clear plastic to express the imprint of the experience on a template of Walker's own skin, the quilt is one of the most eloqent depictions I have seen of the visceral and ever-present 'scar' of dementia on the person with dementia and on the sufferer's kith and kin.

Displayed alongside the quilt, the original study includes a familar 'cause' ribbon shape, made out of fragments of her mother's wedding veil. I was so struck by this - Walker's deep immersion in the centuries' long tradition of female quilt making including and preserving individual and family memories allows her in this piece to express the melancholy and sense of loss while ensurign her mother's hopes as a young bride are retained for the long term.

The use of the twisted ribbon - so familiar from AIDS, Breast Cancer and other campaigns - is also a strong statement of the personal and the political. Dementia has no ribbon, it is invisible by contrast in the public and media gaze. Without this awareness, the frayed edges of the individual dementia sufferer's mind, the way in which s/he is relegated to the margins of society and care, can in turn be relegated to the margins of political discourse and health care planning.

It is this kind of invisibilty which makes it 'acceptable' that so many local health organisations in the UK simply do not account for the funding they are meant to apply for implementation of the National Dementia Stategy, which makes it acceptable for my local MP to say he will not be able to attend the briefing from the Alzheimer's Society on what is the most pressing health issue of our times because his schedule is too busy, which makes it acceptable for us to tolerate the individual nightmares of decline and loss Memoriam depicts.

Every day my mother's dementia -and her decline into a kind of non-being both individually and within society -is inscribed into her being and into mine. Like Walker's 'skin' under the wire wool and plastic, the real impact of dementia on the individuals and their families remains unnoticed and wilfully ignored.

Dolls used in German care home for residents with dementia

Interesting article from the German press about the use of special dolls in a Bavarian care home for the elderly.

Mikaela and Mikael have moved in to the Lucas-Cranach home in Bavaria to help with the emotional and social care for residents with dementia. The special soft dolls are designed to (re)awaken parental feelings and to enable residents to express emotions they may not be able any longer to verbalise.

Caring for the dolls, or a teddy bear, also provides a useful conversational prompt between the residents and with carers and family members.

Researchers from Newcastle General Hospital have apparently studied the intervention and found it to be imnportant in encouraging both emotional and social expression. It will be interesting to see how long it takes for this kind of creative action to be translated from research into action in the UK...

Puppen Ziehen ins Altenheim

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.