Communication needs of the unmarried in advance care planning for dementia

Abstract

Objectives: In Hong Kong, the number of people aged 60 and above with dementia is projected to increase by 222%, from 103 433 in 2009 to 332 688 in 2039. Evidence shows that the unmarried has an increased risk of dementia. Many elderly people are aware of their increasing vulnerability and the importance of advance care planning in dementia (ACP-D) in assuring their quality of life. However, very few really take action. This study aims to identify difficulties facing the unmarried in ACP-D. Method: This qualitative study was conducted as part of an ACP-D psycho-education intervention carried out earlier this year (including 11 females and 3 males [mean age, 69 years] who were divorced, widowed, separated, never-married). The intervention consisted of 4 workshops, covering legal and medical concepts of ACP-D, deciding one's own care wishes, discussions on health proxy, and semi-structured interview for each elderly on one's readiness in identifying health proxy and communicating care wishes. Thematic analysis was adopted and significant findings and key words were categorised into main themes. Results: Four major themes experienced by participants were: (1) being uncertain about their future, feeling vulnerable and need help; (2) having fears of being rejected by proxy, care wishes not being understood, posing too much burden on others and family conflicts; (3) wanting to maximise one's own autonomy; (4) for those without adult children or potential proxy who want to appoint professionals or friends, the lack of legislation in advance directive and health proxy under the power of attorney posed risks for one's quality of death. One important finding was that most participants did not have the communication competence to discuss their fears and care wishes with potential proxies. Conclusion: Psycho-educational activities are important to promote the communication competence of the unmarried elderlies and to let adult children learn ACP-D and be ready to act as proxies.

Objectives: In Hong Kong, the number of people aged 60 and above with dementia is projected to increase by 222%, from 103 433 in 2009 to 332 688 in 2039. Evidence shows that the unmarried has an increased risk of dementia. Many elderly people are aware of their increasing vulnerability and the importance of advance care planning in dementia (ACP-D) in assuring their quality of life. However, very few really take action. This study aims to identify difficulties facing the unmarried in ACP-D. Method: This qualitative study was conducted as part of an ACP-D psycho-education intervention carried out earlier this year (including 11 females and 3 males [mean age, 69 years] who were divorced, widowed, separated, never-married). The intervention consisted of 4 workshops, covering legal and medical concepts of ACP-D, deciding one's own care wishes, discussions on health proxy, and semi-structured interview for each elderly on one's readiness in identifying health proxy and communicating care wishes. Thematic analysis was adopted and significant findings and key words were categorised into main themes. Results: Four major themes experienced by participants were: (1) being uncertain about their future, feeling vulnerable and need help; (2) having fears of being rejected by proxy, care wishes not being understood, posing too much burden on others and family conflicts; (3) wanting to maximise one's own autonomy; (4) for those without adult children or potential proxy who want to appoint professionals or friends, the lack of legislation in advance directive and health proxy under the power of attorney posed risks for one's quality of death. One important finding was that most participants did not have the communication competence to discuss their fears and care wishes with potential proxies. Conclusion: Psycho-educational activities are important to promote the communication competence of the unmarried elderlies and to let adult children learn ACP-D and be ready to act as proxies.