Living with dementia: A systematic review of the influence of relationship factors

Ablitt, Astri; Jones, Gregory V.; Muers, Jane

doi:10.1080/13607860902774436

Cited by 183 publications

(200 citation statements)

References 58 publications

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“…Working through the difficulties is a collaborative effort during which family members commit to the mutual relationship in spite of the disorder [33] . Our findings corroborate earlier findings that although memory disorders may adversely affect family relationships [9] , difficulties may also strengthen them and increase closeness between family members. Meaningful social support, especially from close relatives, was an important mainstay for the families, and promoted feelings of contentment with life.…”

Section: Discussionsupporting

confidence: 82%

“…Previous research has shown that good quality of daily relationships and positive reciprocal communication can promote FCs' wellbeing [31,45,46] and support the positive adjustment of PMDs. It has also been found that enhanced relationship quality can maintain better emotional wellbeing of both the PMD and the FC, which can lead to more positive experiences of living with a memory disorder [9] .…”

Section: Discussionmentioning

confidence: 99%

“…Diagnosis is a turning point that creates significant psychosocial coping demands for the whole family [4][5][6][7] . Previous research shows how memory disorders change family roles and dynamics [5,[8][9][10] . Interestingly, people with early-onset memory disorders and their families face slightly different challenges from those who are older at the time of onset [11][12][13][14] .…”

mentioning

confidence: 99%

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Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Pesonen

Remes

Isola

2014

JNEP

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Objective: Diagnosis of a family member with a memory disorder creates significant psychosocial coping demands for the whole family. The aim of this study was to examine shared experiences of people with memory disorders and their family caregivers during the first years following diagnosis to construct a substantive theory. The study focused on factors related to mutual processes used for managing such life-altering situations. Methods:A qualitative longitudinal research design informed by grounded theory was used. Experiences shared by eight people with memory disorders and their closest family caregivers were determined using semi-structured interviews (n = 23) in their homes. The study participants were recruited from a memory clinic at a tertiary care hospital.Results: A core category, 'Process of accepting memory disorder as part of family life', and related categories and subcategories were formulated from the data. The subcategories 'Acknowledging available qualities and resources', 'Seeking meaningful social support', and 'Living for today', were mutual components of the categories 'Adjusting to altering self', and 'Adapting to a new caregiver role'. The contents of each subcategory comprise a continuum of positive and negative dimensions of adjustment and distress.Conclusions: Accepting a memory disorder as part of family life is a mutual process involving concurrent and specific requirements of both people with memory disorders and family caregivers. Acknowledging the potential of the person diagnosed, opportunities for social support, and living for today, reinforce the process of managing life after a memory disorder diagnosis.

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Section: Discussionsupporting

confidence: 82%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

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Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Pesonen

Remes

Isola

2014

JNEP

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“…Family/friends/carers who assume control, aiming to be supportive, may actually be tapping into the person's greatest fears of dependency (Frazier et al 2003). Maintaining involvement in everyday life is important for the dyad (Ablitt et al 2009). In our conceptualisation of self-management intervention for dementia, the aim is for this relationship to be positively supportive, but not to return all decisions to the person with early dementia as this may be neither feasible nor beneficial.…”

Section: Introductionmentioning

confidence: 99%

“…Interventions addressing personal relationships for people living with dementia are scarce (Ablitt et al 2009). An intervention for people with dementia and their caregivers used joint-problem solving together and communication tasks, reporting better interaction in the intervention group and caregivers were more satisfied with the interaction, although the person with dementia's satisfaction was not reported (Corbeil et al 1999).…”

Section: Introductionmentioning

confidence: 99%

Conceptualisation of self-management intervention for people with early stage dementia

et al. 2012

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Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a ''care-gap''. Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. JosseyBass, Oxford, 1988) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of ''everyday life work'' (targets 1 and 2) and ''biographical work'' (target 3), with inclusion of but less emphasis on specific ''illness work'' (targets 4, 5). We argue that selfmanagement is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia.

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Why the cognitive “fountain of youth” may be upstream: Pathways to dementia risk and resilience through social connectedness

Perry

McConnell

Coleman

et al. 2021

Alzheimer's & Dementia

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Research suggests social connectedness may help older adults with dementia maintain cognitive functionality and quality of life. However, little is known about its specific social and biological mechanisms. This paper proposes two pathways through social bridging (i.e., cognitive enrichment through expansive social networks) and bonding (i.e., neuroendocrine benefits of integration in cohesive social networks). We provide preliminary evidence for these pathways using neuroimaging, cognitive, and egocentric social network data from the Social Networks and Alzheimer's Disease (SNAD) study (N = 280). We found that network size, density, and presence of weak ties (i.e., social bridging) moderated the association between brain atrophy and cognitive function, while marriage/cohabitation (i.e., social bonding) moderated the association between perceived stress and cognitive function. We argue that social connectedness may have downstream implications for multiple pathophysiological processes in cognitive aging, even negating existing structural damage to the brain, making it a strong candidate for clinical or policy intervention.

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Living with dementia: A systematic review of the influence of relationship factors

Abstract: A neglect of direct evidence from the person with dementia is identified, and possible ways of combating this are considered. Clinical implications are drawn with regard to supporting the carer, the person with dementia, and their relationship.

Cited by 183 publications

References 58 publications

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Conceptualisation of self-management intervention for people with early stage dementia

Why the cognitive “fountain of youth” may be upstream: Pathways to dementia risk and resilience through social connectedness

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