TABLE 4.

Summary of characteristics of included papers and quality appraisal

No.	Author(s) and title	Country	Focus	Participants	Methods	Considerations regarding quality of the research (CASP)	Score (1–3, where 1 = high quality and 3 = lowest quality)
1	Hyden and Samuelsson (2019) ‘So they are not alive?: Dementia, reality disjunctions and conversational strategies’	Sweden	Explored the collaboration of people with dementia and their family members in conversation in relation to managing ‘reality disjunctions’	1 female with Alzheimer's disease, her daughter and daughter‐in‐law	Qualitative methodology	Appropriate underpinning framework discussed in introduction	2
					Part of a larger ethnographic study	Methods appropriate for research aim
					Case study	Direct quotes used in qualify themes reported
					Video recordings taken from a series of interactions of a lady with Alzheimer's disease, her daughter and daughter‐in‐law	Discusses findings that contradict previous research findings
					Conversation analysis	Not clear how themes were extracted from the transcripts
						Acknowledges limited data within present study and also existing field, meaning that conclusions should be interpreted with caution
						Appears to address a gap in the literature related to the collaborative effort of people with dementia and family members in carrying out ‘facework’
2	Jones (2015) ‘A family living with Alzheimer's disease: The communicative challenges’	UK	Examined the role of communication deterioration in dementia in the role of family relationships	1 female with Alzheimer's disease, her daughter and son‐in‐law	Case study	One researcher involved in the data collection and analysis therefore, involvement of other researchers may be needed to increase credibility—no discussion regarding triangulation or respondent validation	2
					Conversation analysis of telephone calls between the female with dementia to her daughter and son‐in‐law over a 2‐year period	Detailed description from author of conversation analysis process and why it was an appropriate method for this study.
						Sample of the interactions were used to explain findings
3	Kindell, Sage, Wilkinson, and Keady (2014) ‘Living with semantic dementia: A case study of a family's experience’	UK	Explored the experiences of wife and son caring for a husband/father living with semantic dementia	1 male with semantic dementia, his wife and son	Case study	Data triangulation discussed	1
					Narrative inquiry	Methods explained in detail to enable replication of the study
					Thematic narrative analysis of interview data	Data analysis/coding described step by step
4	Miller‐Ott (2018) ‘Just a Heads Up, My Father Has Alzheimer's’: Changes in communication and Identity of adult children of parents with Alzheimer's disease	USA	Explored how adult children perceived changes in communication with and about their parent with dementia, through the lens of identity	12 adult children of people living with dementia (6 males and 6 females)	Semi‐structured interviews	Clear theoretical framework underpinning the study—‘identity work’	1
					Thematic analysis	Disadvantages of convenience and snowball sampling
						Data triangulation discussed—themes identified were discussed with 2 other researchers
						Member‐checking also discussed—results discussed with 3 randomly selected participants to verify analysis
						Very limited previous research in this area to reinforce findings, but makes suggestions for future research
5	Miron et al. (2019) ‘Young Adults’ concerns and coping strategies and related to their interactions with their grandparents and great‐grandparents with dementia’	USA	Explored coping strategies of young adults when interacting with their grandparent with dementia	14 college students with a grandparent or great‐grandparent living with dementia (12 women, 2 men)	Phenomenology	Clear theoretical framework underpinning investigation	1
					Focus groups and questionnaires	Example list of topic questions for interviews provided
					Interpretative Phenomenological Analysis (IPA) used to analyse data	Quotes from the data used to support findings, but also analysed contradictory findings and linked to literature
						Multiple analysts were used, in addition to respondent validation—fourth specialist dementia researcher, families of people with dementia and care workers to validate findings
						Data saturation discussed
						Author did not discuss how ethically participants were supported if they became emotional during data collection—further information is required regarding protection from psychological harm
6	Purves and Phinney (2012) ‘Family voices: A family systems approach to understanding communication in dementia’	Canada	Explores the impact of communication impairment resulting from dementia on a family unit	Two families:	Ethnography	Interview guide provided and conceptual framework that influenced interview questions	1
				A lady with Alzheimer's disease, her husband and 3 adult children	Semi‐structured interviews with family members of people living with dementia and person with dementia	In‐depth description of data analysis process
				A lady with primary progressive aphasia, and her 4 adult children	Conversation analysis of people living with dementia and their families	Triangulation of data across the different research approaches completed
						Member‐checking discussed. Follow‐up interviews were conducted to ensure that participants’ views were interpreted correctly
7	Schaber et al. (2016) ‘Understanding family interaction patterns in families with Alzheimer's disease’	USA	Explores changes in family interaction patterns when 1 family member had Alzheimer's disease	15 participants, from different families, with a family member living with Alzheimer's disease (2 wives, 10 daughters, 2 daughters‐in‐law, and 1 niece)	Modified analytic induction	Clear and appropriate theoretical framework used to underpin the research	2
						Convenience sampling used
						Interview protocol and questions provided
						Data saturation discussed
						Discusses reduction of bias, interresearcher reliability and researcher dyads to analyse data
						No consideration/ mention of ethical considerations
						Contradictory data discussed
						Discusses implication for practice of occupational therapists in family‐centred interventions
8	Tipping and Whiteside (2015) ‘Language reversion among people with dementia from culturally and linguistically diverse backgrounds: The family experience’	Australia	Explores the experiences of family members who have a relative experiencing language reversion as a result of dementia	7 participants from different families (6 females and 1 male)	Phenomenology	Interview questions used not reported	2
					In‐depth interviews	Discusses researcher reflexivity through use of debriefing
					Purposive sampling method	Describes interpretation checking of findings
					Sample included family members both in caring roles and not in caring roles	Acknowledges small sample size
					Thematic analysis in style of Braun and Clarke (2006)	Limited discussion of contradictory findings
						Discusses implications of the research findings for policy and care settings, and need for further research in this area
9	Walmsley and McCormack (2014) ‘The dance of communication: Retaining family membership despite severe non‐speech dementia’	Australia	Explored communication within a family with a relative with severe dementia and non‐verbal communication	4 family groups with a relative with severe dementia with limited verbal communication:	Phenomenology	Epistemology and methods deemed appropriate to meet research aims	1
				A man and his wife	Thematic analysis	Explicit description of steps taken to conduct thematic analysis
				A lady, and her son, daughter‐in‐law and great‐granddaughter		Reflexivity and bias discussed and efforts made to mitigate this
				A lady, her husband and their friend		Interpretation of findings were discussed and interpreted by multiple researchers
				A lady, her daughter and great‐granddaughter