Table 2.

Features of papers

Author, year and country	Stated aim	Participant characteristics	Method of data collection	Analytical approach	Themes/decisions examined	Setting	Range of capacity of person with dementia
Bloomer et al 2016 Australia13	Explore the experiences of family carers of people with dementia who are hospitalised	20 carers age range 34–92 equal gender distribution mixture of spouses, adult children and friends (no details provided)	Individual face to face interviews	Thematic analysis	Experience of transitioning through the hospital system	Hospital	Not mentioned
Carter 2018 UK14	Exploring the experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia	20 carers 75% female 4 siblings, 2 spouse, 13 children, 1 extended family member	Face to face interviews	Thematic analysis	Experiences and preparedness of family carers for best interest decision-making on healthcare needs	Nursing home	Not mentioned
DeBellis 2017 Australia15	To explore relatives’ experience, knowledge and perceptions of challenging behavioural and psychological symptoms of dementia and association with antipsychotic use for persons with dementia in residential aged care.	Six participants all F age 45–62, four daughters, one wife, one daughter in law	Face to face interviews	Thematic analysis	Experiences, knowledge and perceptions of antipsychotic medication use for the person with dementia	Residential care home	Not mentioned
Dening 2017 UK16	To understand the lived context of healthcare decision-making in the past, present and future for people with dementia and their family carer	Six carers age 49–85 Five spouses, 1 adult child	Face to face interviews	Thematic analysis	Healthcare decision-making in the past, present and future	Memory clinic service	Had capacity to participate in the study
Elliot 2007 USA17	Investigating the decision-making of family members of institutionalised older adults with advanced cognitive impairment, with particular focus on spirituality and meaning	39 family members average age 62 4 same generation (spouse/sibling) 35 adult children	Focus groups	Constant comparative method	Healthcare decisions	Nursing home	Not mentioned
Griffiths 2020 UK18	Decision-making in cancer care for people living with dementia	22 family relatives Female (64%) Relationship to participant Child 55% Spouse 32% Sibling 9% Grandchild 5%	Face to face interview with relatives	Thematic analysis	Decisions on healthcare needs	Hospital setting	Full capacity
Jamieson 2016 Australia19	Investigating the experience of people with dementia and their carers when transitioning from home to hospital	30 carers 87% female	Started with focus groups, but as these were difficult for carers to access, changed to individual telephone interviews	Thematic analysis	Decisions on health and social care needs during transitions home from hospital	Decisions on health and social care needs during transitions home from hospital	Not mentioned
Livingston 2010 UK20	Exploring how carers make decisions for people with dementia who lack capacity	Focus groups: 43 participants Individual interviews: 46	Focus groups to generate the list of difficult decisions, Individual interviews to explore in depth	Grounded theory	Decisions on health and social needs	Primary care clinics	Not mentioned
McWilliams 2018 UK21	To investigate cancer-related information needs and treatment decision-making experiences of people with cancer dementi a, their informal caregivers and oncology health care professionals	Nine carers mean age 73.6 44% female 56% spouse, 44% child	Face to face interviews	Thematic analysis	Decisions on healthcare needs	Hospital setting	People with dementia ranged from having full capacity to no capacity
Shanley 2017 Australia22	Providing support to surrogate decision-makers for people living with dementia: healthcare professional, organisational and community responsibilities	34 surrogate decision-makers. 79% female 85% adult children mean age 57.4	Individual face to face or telephone interviews	Thematic analysis	Decisions included residential care, giving up driving, consenting to medical treatment and end of life	Community or in a residential aged care setting	Not mentioned
Sinclair 2018 Australia23	Explore how couples with dementia experience healthcare, lifestyle, and everyday decision-making	15 carers Aged 59–82 60% female All spouse partners	Face to face interviews, 6 individuals, 9 couple dyad interviews	Thematic analysis	Decisions on healthcare, lifestyle, and everyday decision-making	Community and residential care settings	Not mentioned
Thompson 2021 Canada24	Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia	17 family caregivers Female (70.6%) Male (29.4%)	Face to face interviews with bereaved family caregivers of persons with dementia	Thematic analysis	Decisions on healthcare needs	Nursing home setting	Not mentioned
Truglio-Londri gan 2018 USA26	To identify Alzheimers disease-specific decisions that past and present caregivers faced over the disease trajectory	13 carers 85% female Nine adult children, Three spouses	Focus groups	Thematic analysis	Decisions on health and social care needs	Community setting	Not mentioned
Walker 2001 UK26	Investigating how we facilitate carer’s involvement in decision-making?	20 carers of people with dementia No further details on participants provided	Face to face individual interviews	Constant comparative method	Decisions on healthcare needs	Hospital setting	Not mentioned
Wolfs 2012 The Netherlands27	Gaining carer’s insights into the decision-making process about treatment and care in dementia patients	26 carers 50% female 11 spouses, 12 adult children,3 other	Brief individual interviews inform interview schedule, then focus groups	Grounded theory	Decisions on healthcare needs	Community setting	Not mentioned