Challenges of Engaging People With Early Dementia in Advance Care Planning: Perspectives of family carers of persons with advance dementia
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As the global population ages, dementia is gaining prevalence. As there is a growing consensus that dementia is a progressive life-limiting disease, the introduction of advance care planning (ACP) to dementia care becomes important and relevant. Persons with dementia will gradually lose mental capacity and thus decision-making capacity as the disease advance, which may add burdens to their family carers and the healthcare team. ACP encourages persons with early dementia (PWEDs) to discuss and express personal wishes for the future and promotes future care earlier, when they are still mentally capable. Their views are essential to guide person-centered palliative care. However, very few of PWEDs have been involved in ACP in Hong Kong.

This study adopted a qualitative inquiry approach to examine the challenges of engaging PWEDs and their carers in ACP from the family carers’ perspectives. Ten family carers of persons with advanced dementia were recruited from community through purposive and snowball sampling. Their views on engaging the dyads of PWEDs and their carers in ACP were explored. Data were collected through semi-structured individual interviews, and content analysis was conducted concurrently. Themes were identified and emerged until data saturation.

Key themes emerged included: i) inadequate understanding about the disease and its management; ii) difficulty in thinking ahead; iii) PWEDs have poor insight; iv) PWEDs have difficulty in accepting the diagnosis and new things; v) PWEDs have misunderstanding about the initiatives of ACP discussion; vi) lack of communication and consensus among family members.

ACP is theoretically beneficial to the triad of PWEDs, carers and healthcare professionals. Yet, when and how to engage PWEDs in ACP, and what should be included in the discussion remains a challenge. A consideration of the above challenges is essential to design an ACP intervention that is feasible and acceptable.
Acceptance Date17/11/2018
All Author(s) ListYeung C.C.Y., Chan H.Y.L.
Name of ConferenceThe 15th Hong Kong Palliative Care Symposium
Start Date of Conference17/11/2018
End Date of Conference17/11/2018
Place of ConferenceHong Kong
Country/Region of ConferenceHong Kong
LanguagesEnglish-United Kingdom

Last updated on 2019-14-01 at 11:13