HOSPICE & PALLIATIVE CARE
Understanding the Complexities
Dr. Karen Harrison-Dening, Head of Research and Publications at
Dementia UK, discusses the complexities that need to be considered when providing end of life care for persons living with dementia.
Dementia is one of the biggest health issues of our time. Recent statistics from Public Health England highlight that dementia is the leading cause of death for women and is also set to be the leading cause of death in men by 2020, overtaking heart disease.
End of life care can be particularly challenging in cases of dementia. It can affect families on so many levels; mentally, physically and spiritually. This makes it vital to have appropriate pathways to care in place which respect families’ needs, rights and wishes, and allow the person with dementia to be treated with compassion and respect at all times.
HELPING TO PREPARE
End of life care is a difficult topic to broach for families but putting arrangements in place now can help families plan for the future, minimising stresses on them and the person with dementia as the condition progresses. These arrangements can include...
ADVANCE CARE PLANNING:
This process involves discussing future care arrangements between individuals and their health and social care providers. These discussions anticipate a situation where a person with dementia no longer has the capacity to outline their preferences – ACP aims to record these preferences.
In comparison to cancer and other chronic long-term health conditions, studies have shown that family carers and people with dementia either don’t engage in ACP discussions at all or there is inadequate preparation around future care challenges. Discussions around this can be instigated by healthcare professionals.
LASTING POWER OF ATTORNEY:
A Lasting Power of Attorney can also be used by families to make decisions, regarding finances and health for example, on behalf of someone who has lost the capacity to consent in the case of dementia. This needs to be put in place before the person with dementia loses capacity.
- 24 - MAINTAINING DIGNITY IN DYING AMONGST
FAMILIES AND HEALTHCARE PROFESSIONALS: In such challenging circumstances, families cannot be expected to navigate through the complexities of end of life care in dementia themselves. A joint effort is required and health and social care professionals can help families open up conversations around dying in dementia.
Admiral Nurses for one are playing a vital role in this area. At every stage, they are there to help the whole family, practically as well as emotionally. With families oſten falling in the gap between health and social care, Admiral Nurses can help link the two together, giving families the end of life care they need on both a social and healthcare level.
Families oſten face isolation and guilt following the death of someone close to them. In these instances, Admiral Nurses can also support families in readjusting to a life beyond caring by linking them up to support groups in the local community, as well as helping them to find coping strategies.
EMOTIONAL AND PRACTICAL SUPPORT
AROUND DEMENTIA AND DYING: • Consider approaching an Admiral Nurse or other healthcare professional around advice on Life Story Work. This is important for families and healthcare professionals to see that dementia shouldn’t define a person and recognise what that person has achieved in their lives, and ultimately who they are.
• Recognise the importance of planning early on through Advance Care Planning and Lasting Power of Attorney (see above). If you’re unsure about how to approach either of these topics with a family, then please get in touch with the Admiral Nurse Dementia Helpline on 0800 888 6678.
• Direct families to suitable support groups following the death of their relative and encourage them to develop new interests to help them to adjust to this new chapter in their lives.
www.dementiauk.org www.tomorrowscare.co.uk
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