Palliative and end of life care of dementia at home is feasible and rewarding

Abstract

Even though palliative care of dementia and care at home are key NHS priorities, services that set out specifically to support palliative care of dementia at home are virtually non-existent. We studied a novel service that has supported many people with advanced dementia at home through till death. Key factors for success include the right equipment, expertise around relevant medication, food, and social care needs, as well as understanding and support for funding care commissioning and informal care. The study revealed blockages to accessing support as a result of poor understanding of the needs of advanced dementia care as well as organizational prejudice. We demonstrate that good, home based palliative care of dementia can be achieved with very positive outcomes. Bereavement may be helped by the process of caring at home till death. Given that the Audit Commission has cited home care of advanced dementia as good value for money, it is of grave concern that services to support people with advanced dementia at home are not available.

The unmet palliative care needs of those dying with dementia

“…Obstacles to accessing palliative care for those with dementia A plethora of literature exists advocating that people with dementia should have access to palliative care and hospice services (Mitchell et al, 2007;Birch and Draper 2008;Shega et al, 2008;Treloar et al, 2009;van der Steen, 2010;de Vries and Nowell, 2011). However, it is clear from the literature that people with end-stage dementia do not receive adequate or appropriate EoLC for a number of reasons; end-stage dementia is difficult to diagnose and dementia is often viewed as part of the natural ageing process (Phillips et al, 2011;Illiffe et al, 2013).…”

152Supporting People with Dementia to Die at Home in Ireland

“…• Having a longer term functional disability with a gradual decline can increase the likelihood of a home death due to giving the person and their family time to plan ahead; (5,12,16). …”

“…• Having access to home care packages and local services to support the person with dementia and their family carers (5,8,18). …”

Ethics and artificial nutrition towards the end of life

“…2 Instead, it is recommended that careful hand feeding be offered despite the risk of aspiration pneumonia. 13,14 …”

“…16 Not all patients with 'unsafe swallow' die rapidly if careful oral nutrition and hydration are practised. 14 Those caring for such patients should be aware of the natural history of this terrible disease and that medical interventions have limited benefit and many risks. Nursing homes should be encouraged to accept the increased risk associated with oral feeding in preference to demanding a PEG in advanced dementia.…”