Dementia needs hospice, needs dementia?

Featured article - 18 September 2017
David Jolley, NMCF member

‘Dementia’ and ‘Alzheimer’s’ have acquired a monstrous profile. There is a lot of it, yet Manthorpe and Iliffe declare it ‘a fuzzy’ (1). They and the Lancet (2) conclude that reliance on a treatment model is misconceived. Encouragement comes from natural experiments showing incidence falling where people live healthier life styles. For those who develop dementia there are approaches which make life easier. These include maintaining as full and active a life as possible, decent diet, exercise, social interaction and involvement in art-based occupations: music, dance, stories, pictures, poems, reminiscing. This is good palliative care, stretched long.

All this needs to be backed by appropriate care – much from family, a balance from services. Once someone has dementia, they will die with dementia. Its presence will influence the final years. Too often the last days are tainted by unresolved, unattended symptoms. Early identification and careful diagnosis give way to rationalised abandonment by Psychogeriatric services. Where hospices take the lead in end of life care for people with dementia this scandalous outcome is avoided (3). A new, informed, positive and responsible picture pushes all that sadness aside. Why is it that less than 20 hospices have taken up this challenge? (4)

References: Manthorpe J and Iliffe S (2016 &2017)) The Dementia Strategy: time to change course. Journal of Dementia Care November/December 24 (6) 14-15; January/February 25(1) 16-18; March/April 25(2) 12-14; March/April 25(3) 18-20 Livingston G et al (2017) Dementia prevention, intervention and care. The Lancet Commission. Doi.org/10.1016/S0140-6736(17)31757-9 Regan A, Tapley M and Jolley D. The potential of hospice in helping people with dementia and those who care for them as the end of life approaches. European Journal of Palliative Care; 2014: 21(1): 6-10 Amador S, Goodman C, Robinson L, Sampson E. UK end of life services in dementia, initiatives and sustainability: results of a national online survey. BMJ Supportive and Palliative Care 21.9.2016 doi:10.1136/bmjspcare-2016-001138

• The National Mental Capacity Forum