Family relationships and dementia: a synthesis of qualitative research including the person with dementia

Fontaine, Jenny La; Oyebode, Jan R.

doi:10.1017/s0144686x13000056

Cited by 56 publications

(69 citation statements)

References 36 publications

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“…Participants John, Julie, Michael, Wendy, Thomas and Ann expressed having a positive relationship with their caregiver involving love, appreciation and care for one another and these characteristics transpired through communications they felt to be meaningful. Research studies on couplehood encapsulate the importance of the interpersonal relationships within communication: mutual compassion, gratitude, affection, respect and togetherness as well as involve, adapt to changing needs and pursue shared understanding promote relationship satisfaction, caregiving satisfaction and enjoyed interactions (Daley, O’Connor, Shirk, & Beard, ; Hellström, Nolan, & Lundh, ; Kaplan, ; La Fontaine & Oyebode, ; Molyneaux et al, ; Perry & O’Connor, ). Furthermore, the presence of an implicit relational knowing oriented towards a sense of trust within a relationship can enable a person to share their thoughts, feelings and values, allowing others to enter their world which supports further communication and desire to share understanding (Fonagy & Allison, ).…”

Section: Discussionmentioning

confidence: 99%

‘It’s nice to think somebody’s listening to me instead of saying “oh shut up”’. People with dementia reflect on what makes communication good and meaningful

Alsawy

Tai

McEvoy³

et al. 2019

Psychiatric Ment Health Nurs

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Accessible summary What is known on the subject? People with dementia experience cognitive decline which can affect their ability to communicate with others and consequently getting their needs met. Loneliness and social isolation are associated with depression and anxiety, while difficulties communicating may magnify such difficulties. Enhancing meaningful interactions may support maintenance of valued relationships and positive wellbeing. Although previous research has examined communicative experiences, this has been from the perspectives of professionals or caregivers. Exploring meaningful communication from the perspectives of people with dementia is crucial in supporting relationships and wellbeing. What the paper adds to existing knowledge? People with dementia can be active participants in research. They are aware of their cognitive impairments as well as social interactions and features constituting meaningful communications. People with dementia recognized carers’ attempts to understand and empathize with them; allowing them to feel valued and heard, empowering them to maintain interactions. Alternatively, feeling dismissed, inferior or pressured to provide ‘correct’ responses deterred them from further conversations. What are the implications for practice? People with dementia have an awareness of their relationships, communications and preferences. Thus, it is imperative to respect this population and make attempts to understand their communication as they sense this effort even when miscommunications occur. Embrace qualities that facilitate person‐centred care within communications is vital as this can preserve valued relationships, support one's needs and enhance wellbeing. Such features include active listening, empathizing, being physically and mentally present, spending time to know the individual and sharing experiences, thoughts and emotions. AbstractIntroductionSocial isolation can be problematic for people with dementia; understanding what makes communication meaningful may reduce such risk.Scientific rationalePrevious research has examined caregivers’ or professionals’ experiences of meaningful communication. Understanding this from the perspectives of people with dementia could enhance their interactions and wellbeing.AimExploring what makes communication meaningful from the perspective of people with dementia.MethodsNine dyadic interactions between a person with dementia and a family carer were filmed. Individuals with dementia watched the footage and reflected on their communications in semi‐structured interviews.ResultsThree superordinate themes emerged. Themes ‘sharing moments of emotional connection’ and ‘empowering one's ability to communicate’ related to the experience of feeling connected, understood, valued and heard, allowing further communication. Conversely, ‘inhibitors to communication’ related feeling disempowered and reduced interactions.DiscussionEven when carers could not understand what people with dementia attempted to communicate, their efforts to interact wi...

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Section: Discussionmentioning

confidence: 99%

‘It’s nice to think somebody’s listening to me instead of saying “oh shut up”’. People with dementia reflect on what makes communication good and meaningful

Alsawy

Tai

McEvoy³

et al. 2019

Psychiatric Ment Health Nurs

View full text Add to dashboard Cite

show abstract

“…The impact and the severity of the illness of the care receiver were discussed within the safety of the groups by carers who otherwise might not have spoken out within the privacy of the family. Prior studies have shown that good relationships between siblings and family members can have a positive impact on the care receiver's well‐being (La Fontaine & Oyebode, ; Livingston, Cooper, Woods, Milne, & Katona, ).…”

Section: Discussionmentioning

confidence: 99%

Support groups for carers of a person with dementia who lives at home: A focused ethnographic study

Lauritzen

Bjerrum

Pedersen

et al. 2019

Journal of Advanced Nursing

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Aims To explore and understand carer participation in support groups when caring for a person with dementia who lives at home. Design Focused ethnographic design. Methods Participant observations and semi‐structured interviews were conducted from January–December 2015. The data were collected from four support groups in the Danish primary healthcare system. Interviews were conducted with 25 carers. An inductive content analysis of the data was performed. Results Three themes were identified: emotional well‐being due to peer and family support, emotional sense of togetherness despite hardships and emotional and ethical considerations in caregiving. Conclusion Support group participation with positive peer interaction increases carer self‐esteem and feelings of togetherness, and an awareness of maintaining the care receiver`s dignity and prevention of conflicts with families, resulting in an improvement in carer well‐being, leading to increased motivation to continue caring. Carers who hid their group participation face a potential conflict with the care receiver. Impact By sharing positive experiences, carers have increased self‐esteem and feelings of togetherness, which can have a positive impact on their motivation to continue caring. Positive peer interaction encouraged a shift in focus from negative to positive experiences, resulting in an improvement in carer well‐being. Joint group participation prevented conflicts in families. To protect the care receivers, carers kept support group participation a secret. Healthcare professionals could improve carer well‐being by focusing on positive caring experiences in support groups.

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“…, Keady and Nolan ). Following their synthesis of qualitative research examining family relationships in dementia, La Fontaine and Oyebode () argue for the need to explore both positive and negative themes in this area; for example, those families ‘working apart’ or feeling ‘disconnectedness’ and direct observation of interaction is an important aspect to this. Overall, therefore, there is a need for research to directly examine interactions between the person with dementia and their family members at home and examine how this sits within the broader context of their lives and the ways they face dementia within their relationships.…”

Section: Discussionmentioning

confidence: 99%

Everyday conversation in dementia: a review of the literature to inform research and practice

Kindell

Keady

Sage

et al. 2016

International Journal of Language & Communication Disorders

124

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BackgroundThere has been increasing interest in dementia care in recent years, including how practitioners, service providers and society in general can help individuals to live well with the condition. An important aspect to this is provision of advice to ensure conversation partners effectively support the person with dementia in conversation.AimsTo provide a descriptive review of the literature examining everyday conversation in dementia in order to inform practice and research.Methods & ProceduresThis review used a method specifically developed for reviewing conversation analytic and related literature. A range of databases were searched using key words and explicitly described inclusion criteria leading to a final corpus of 50 titles. Using this qualitative methodology, each paper was examined and data extracted. The contribution of each of these is described and the implications for practice and research are outlined.Main ContributionThis review examined studies into conversation in Alzheimer’s disease, vascular dementia and Lewy body dementia, grouping these into: early influential studies; work drawing on positioning theory; studies using social and linguistic approaches; collaborative storytelling; formulaic language; studies specifically using conversation analysis; and conversation as a target for individualized therapy. In addition, more recent work examining primary progressive aphasia and behavioural variant frontotemporal dementia was explored. Overall, this review indicates that research examining conversation in natural settings provides a rich source of data to explore not just the challenges within conversation for those taking part, but also the skills retained by the person with dementia. An important aspect of this understanding is the notion that these skills relate not only to information exchange but also aspects of social interaction. The role of others in scaffolding the conversation abilities of the person with dementia and the potential of this for developing interventions are discussed.Conclusions & ImplicationsThe review indicates that interventions targeting conversation in dementia are often advocated in the literature but currently such approaches remain to be systematically evaluated. In addition, many of the important insights arising from these studies have yet to inform multidisciplinary dementia care practice.

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Family relationships and dementia: a synthesis of qualitative research including the person with dementia

Abstract: This synthesis contributes to an emerging field but also highlights gaps in current understanding of the impact of dementia upon relationships and in providing appropriate interventions. Implications for research and practice are considered.

Cited by 56 publications

References 36 publications

‘It’s nice to think somebody’s listening to me instead of saying “oh shut up”’. People with dementia reflect on what makes communication good and meaningful

‘It’s nice to think somebody’s listening to me instead of saying “oh shut up”’. People with dementia reflect on what makes communication good and meaningful

Support groups for carers of a person with dementia who lives at home: A focused ethnographic study

Everyday conversation in dementia: a review of the literature to inform research and practice

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