Specialist palliative care for people with dementia

There has been talk of a ‘demographic time bomb’ and the occasional media furore about conditions of care for those affected by dementia for some years now, but as a society we have tended to turn away from them; oppressed by a sense of hopelessness about it all. For those of us who have direct experience of loved ones in this predicament there may also be that uncomfortable burden of guilt and helplessness.

Catalyst has recently approved £26,000 funding for a 2 year research project to be carried out by St Helena Hospice.

As someone who has studied the early days of the hospice and palliative care movement, Dr Kate Powis can see parallels with social attitudes to cancer forty or so years ago. It was this understanding, along with the recent publication of key statements by government and other national bodies examining these issues, that got her thinking about how palliative care was being applied to the care of people with dementia. Could a model that was developed for a very different way of dying be successful in these cases? Anecdotal accounts from practitioners suggested that there were indeed problems, but also significant potential for creative developments in this area.

Funding from Catalyst has allowed Dr Powis to embark on the first stage of research involving a deeper analysis of current literature on this topic, which will then inform a pilot project based in St Helena Hospice. So far she has discovered that, while a ‘cure’ or a predictable drug regime treating the varying forms of dementia may be some way off, more humble interventions involving a range of practices aimed at supporting the personhood of the patient can play a major part in keeping these people ‘socially alive’ in ways that challenge our previous conceptions.

Reminiscence work, music and dance, higher quality sensory environments and the patient, microcosmic attentions of ‘coma care’ practice can all help to maintain subtle and enriched forms of communication. These are all aspects of holistic practice, an approach to palliative care championed by the hospice movement for years. The challenge in this context however is that those delivering this care may well be those without specialist training or formal qualifications, so what might be the role for those who come from the established palliative care tradition? Mutual learning – with ‘experts’ learning from the experienced – would seem to be called for, with Jo Hockley of St Christopher’s Hospice identifying one approach in her recent research in Edinburgh care homes.

Dr Powis said:

“ St Helena’s is planning a Dementia Education Day in June 2010. Speakers who are living with dementia and both lay and professional carers will share their experiences, followed by a workshop where those attending can reflect on a case study. We are anticipating considerable interest and some lively and thoughtful discussions”.

Pic caption: Dr Kate Powis, St Helena Hospice


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