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Read Sarah's blog about Hospice care supporting end of life care for people with dementia

A Hospice provides specialist, palliative care to those who have a terminal, or life-limiting illnesses. It includes physical, psychosocial, social, and spiritual care, for both the person dying, and their family in a calm, peaceful environment. Many Hospices try to provide a home from home environment, with most, having no set visiting hours and some even allowing pets to visit. Unlike hospitals or care Homes, there are usually only a relatively small number of beds available in private rooms and in the UK, they are mainly registered charities that receive no government funding but are free at point of access to all.

They provide many services that the public are potentially unaware of. There is no doubt that they have a role to play in supporting people dying with dementia, particularly when co morbidities exist. How prepared they are to provide that support though, both in terms of dementia specifically trained staff and availability of resources is another matter.

Hospice's offer many services, not merely in-patient beds for end-of-life care. Lindsey Lodge Hospice in Scunthorpe for example, offer respite care as well as Wellbeing services and complementary and holistic therapies. The hospice not only provides care for the person with dementia, but they often provide pre and post bereavement counselling for carers and close family members which can be invaluable. Family carers’ needs are often overlooked particularly at end of life, but the grief associated with a loved one dying of dementia can be much more complex than the type of grief associated with death from other long term health conditions. 

Ideally people with dementia will have made their wishes known around end-of-life care in an Advanced Care plan, detailing where they would like to die and what measures should or should not be taken to prolong or extend life. In reality though, this often does not happen for a variety of reasons. In the early stages of dementia, it is not necessarily something that the person with dementia or their family wants to consider, and it may feel too early for them to make that decision as they may still be struggling to come to terms with the diagnosis.

Most palliative care services in UK are modelled on the cancer disease trajectory. Despite calls for increased palliative care provision for patients with dementia, there is little evidence to guide the construction of such services. Although healthcare professionals appear to be able to pick up signs of pain, it is known that UK hospitals do provide less pain control to patients with advanced dementia. Moreover, hospice care is considered to provide the best support, security, and control of symptoms, although professionals are often reluctant to refer people diagnosed with dementia.

One issue that does need considerations is whether a hospice is the right environment for a person at end of life with dementia. Hospice’s can be homely, caring environments but if for example a person has already had a move into a care home, it may be that another move would be tremendously unsettling for them, despite the potential benefit of that move in terms of care. 

There is an argument that the much more homely environment provided by Hospice care would be beneficial to both the dying patient and their family as many people with dementia spend their final days in hospital settings which are totally unsuitable and add to patient and carer distress. 

The beneficial effects of hospices are widely documented. Patients receiving hospice services have less pain, fewer admissions to ICUs, greater satisfaction with their medical care, and a better mood relative to those not using hospice. Family caregivers also report feeling supported during the dying process and have reduced risks of mortality, depression, and anxiety post loss, in part because they receive bereavement support services.

However, Care Homes or Nursing homes it could be argued can equally provide that type of homely environment that can be soothing for the patient. If pain relief is provided and staff are skilled in assessing the person’s body language and facial expressions to ensure that pain relief is appropriately administered there is no reason a person should need to be moved to Hospice Care.

There are certainly barriers to Hospice care being viewed as a suitable option for a person at end-of-life with dementia .It is argued that failure to recognise dementia as a terminal condition, and the costs attached to accommodating non-cancer patients, may preclude access to palliative care. However, by the time the decision needs to be made, it is often too late and mental capacity has diminished to such a degree that such a decision can no longer be made.

Hospices have traditionally have also been slow to engage with people living with dementia – they have made a small investment into the care and support of people with the disease. Although it may be argued that there is a need for hospice support in dementia care in theory, in practice this could be difficult to achieve. As someone with dementia progresses to end of life, their dementia may affect communication to such an extent that it is difficult to verbalise pain or to try and articulate their needs in any meaningful way, this can create an issue that needs to be overcome.

There is certainly a place for Hospice care in supporting people at end of life with dementia to die well but there are certain issues which need to be considered and addressed first. There is a need for more collaborative working with other other agencies, particularly local mental health services and memory services. The issue of staff training needs to be addressed. It is not enough to be merely Dementia aware; staff needs to be trained in the complexities of caring for someone with advanced dementia, ideally with an Admiral Nurse or appropriately trained Dementia nurse available to provide care. Thought would also need to be given to the needs of other patients in the hospice and how to mitigate any distress they may suffer because of someone with potentially aggressive behaviours or who exhibits behaviours that challenge. It is only if Hospice’s embrace the potential to care for patients who are at end of life with dementia that the future will change.

This blog was written by Sarah, tide Head of Campaigning and Influencing

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