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There will be large numbers of people with dementia as the population continues to age.  Dementia is a progressive, irreversible neurodegenerative condition that greatly reduces life with one in three of the population expected to die with or from dementia. Historically dementia was regarded a mental illness and as such, care provision in the UK was provided through secondary mental health services. Over the last decade there has been a wide and growing acceptance that dementia is the result of various forms of brain diseases that culminate in brain damage, so not a mental illness.  Similar numbers of people with dementia may also experience a co-morbid mental health condition, as in the general population. However, since dementia transitioned from the auspices of mental health service it has become homeless.  Dementia now seems to fall between the ‘pavement slabs’ of various services and organisations.  There are times during the life of a person with dementia where they require the services of mental health still; the process of gaining a diagnosis, treatment for other mental health conditions, such as depression.  There will be times when there are social care needs, such as assessment for care services, day care, residential care, etc.  However, there lacks continuity in which service is the identified lead organisation, who provides a consistent approach?  Families affected by dementia often move fruitlessly between health and social care services in attempt to seek a tried and trusted pathway of care. Dementia is homeless.

A palliative approach

There is no current medical cure or treatment for dementia yet it has not traditionally been recognised as a life limiting condition and one that may benefit from a palliative care approach. It is now recognised and accepted, particularly in developed countries, that an integral part of care coordination and case management pathways for people with dementia should include end-of-life care. The European Association of Palliative Care (EAPC) published a consensus statement attempting to define the principles of practice of palliative care, which are to take a holistic approach, valuing autonomy of patients and their families, with a focus on dignity, a collaborative relationship between healthcare professionals, patients and their families, good communication, and to maintain the quality of life. More recently the EAPC sponsored a consensus study involving 64 experts from 23 European countries, including the UK, to provide the first definition of palliative care in dementia.  Fifty-seven recommendations resulted covering eleven domains, with the aim of providing guidance for clinical practice, policy and research.  The EAPC White paper presents healthcare professionals with a more tangible template for supporting families affected by dementia.

Commissioning palliative care in dementia

Access to palliative care for people with dementia has long been advocated by Dementia UK and Admiral Nursing, from the point of diagnosis of this life-limiting condition through to the end of life of the person with dementia and aftercare in bereavement support for family carers. Therefore, the person-centred philosophy of palliative care resonates with the often lengthy trajectory and heavy symptom burden of this terminal condition. Indeed, the National Institute for Clinical Excellence (NICE) guidance recommends the offer of flexible, needs-based palliative for families affected by dementia that takes into account how unpredictable dementia progression can be. In its overarching statement the NICE guidance also states that it is a commissioner’s duty to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities, yet access to palliative care for people with dementia and their families remains inequitable across the UK. While Dementia UK aims to negotiate the most inclusive approach when implementing the Admiral Nurse model, access to it ultimately depends on the host or commissioner of the service. It is encouraging to see a seed change in the hospice movement across the UK with a growing number recruiting Admiral Nurses to enable them to extend a hand to families affected by dementia who are struggling with a particularly fragmented health and social care services.  Tom Kitwood, the guru of person-centred dementia care stove to inspire services to deliver and support care that was person centred. It would be a truly marvellous development in dementia care if it were to be embraced by the palliative care world – dementia would no longer be homeless but embraced within a field that has person centred care at its core.

Dr Karen Harrison Dening

Head of Research & Publications, Dementia UK

13 January 2020

Further reading

Harrison Dening, K. et al. (2018) Palliative care in dementia: a fragmented pathway? International Journal of Palliative Nursing. 24(12): 112-122.

Kitwood, T. (1997) Dementia reconsidered: The person comes first. Buckingham: Open University Press.

Radbruch, L. et al. (2009) White Paper on standards and norms for hospice and palliative care in Europe: part 1 Recommendations from the European Association for Palliative Care', European Journal of Palliative Care, 16 (6).