Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK.
International Psychogeriatrics (Impact Factor: 1.93). 09/2013; 25(12):1-11. DOI: 10.1017/S1041610213001531
Source: PubMed


Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.

This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.

People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.

Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

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Available from: Louise Robinson, Dec 05, 2014
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    • "Some studies have found that family caregivers are reluctant to engage in ACP and are unprepared for this responsibility (Ayalon, Bachner, Dwolatzky, et al., 2012). A limited understanding about the disease trajectory could also make it difficult to anticipate the role of an ACP for family caregivers (Caron, Griffiths, & Arcand, 2005; Dickinson et al., 2013). Family caregivers with limited knowledge of their family members previously expressed preferences could struggle to make appropriate decisions and would perhaps justify decisions based on what is the best thing to do in the circumstances which may or may not reflect the wishes of the person with dementia. "
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    ABSTRACT: Background: End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions. Aim: To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia. Design: Qualitative research including a series of single cases (close family relatives). Methods: A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010. Results/Findings: Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life. Conclusions: Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.
    Dementia 09/2014; DOI:10.1177/1471301214548521 · 0.91 Impact Factor