My future wishes: Advance Care Planning for people with dementia

Beverley Marriott is an Advanced Nurse Practitioner working in the Birmingham community healthcare foundation trust. She is also a King’s College Older Person Fellow. She tweets @bevbighair

The “My future wishes: Advance Care Planning (ACP) for people with dementia in all care settings” document was recently published by NHS England, Dementia Team and End of Life Care Team.

Advance care planning (ACP) is a vital part of personalised care planning. This recently published document acts as a resource to support clinicians and practitioners who provide health and social care for people with dementia. It aims to ensure people living with dementia can develop an ACP through initiating conversations with their supporting clinicians and/or loved ones. It aims to offer a consistent standard of support for patients diagnosed with dementia using ACPs that are developed in partnership with patients and families.

As a supporting clinician I know how time consuming it can be to arrange partnership meetings with families and carers, to discuss care plans, to agree what an ACP should look and to ensure the patients’ needs are kept central to all decision making. Growing caseloads and an increase in the number of patients we see daily makes this even more challenging. However, it is essential that time is set aside for this and as supporting clinicians we owe it to our patients and their families and carers to get this right.

There have often been times from experience when an ACP conversation has not been possible. Despite everyone’s best intentions to initiate ACP conversations throughout the patient journey this has been unsuccessful. Perhaps the person living with dementia may not have wished to engage in ACP conversations? Perhaps they may have reached a stage where such conversations are no longer possible?

My future wishes Advance Care Planning (ACP) for people with dementia highlights the importance of offering personalised care, so people living with dementia have the same opportunities as those diagnosed with life-limiting conditions. This includes access to palliative care services. It is essential future wishes including emergency plans (for example ReSPECT), DNAR, treatment escalation plans, preferred place of death and faith wishes are discussed.

The following summarises some key take home messages or ‘top tips’ for ACPs from this recently published document:

  • Establish what is important to the person. Focus on positives if the person is reluctant to have a conversation, for example start by asking: What would they like to do / what are their goals for the next six months?
  • When participating in ACP conversations, bear in mind that 43% – 61% of all working age adults routinely do not understand health information (Institute of Health Equity 2015).
  • Include details of any comorbidities in the ACP to help ensure that any decisions made are holistic to all health needs and so that the plan can be tracked on the shared electronic records system
  • Involve the people who are important to them – carer, friends, family and medical / caring professionals.
  • Ensure you have access to the right resources for an ACP / future wishes conversation (including culturally appropriate and inclusive resources).
  • Confirm who the ACP may be shared with and whether the person living with dementia has considered appointing a Lasting Power of Attorney (LPA) for Health and Welfare.
  • Try to empower the person diagnosed with dementia and their carers to facilitate ACP conversations. Promote free dementia courses / learning for carers, for example https://www.scie.org.uk/e-learning/dementia
  • Address language and accessibility requirements and consider faith, spiritual, religion, pastoral and cultural needs that might have a bearing on care provision in addition to disabilities, sexual orientation and / or gender identity.
  • Ensure access to palliative and end of life care and where possible, establish the person’s preferred place of care and preferred place of death and whether this can be accommodated without their care being compromised.

Finally, let’s get this right. Let’s consider social prescribing to support those closest to and caring for the person with dementia. Let’s embed ACP into daily practice. Let’s link in nursing and care homes, GPs and hospice professionals. Let’s include frailty, palliative care and dementia together.

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