‘Making the best you can of it’: living with early‐stage Alzheimer's disease

MacRae, Hazel

doi:10.1111/j.1467-9566.2007.01056.x

Cited by 47 publications

(43 citation statements)

References 27 publications

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“…Six studies included explicit prioritization of outcomes through ranking or survey responses from stakeholders [11], [22], [24], [27], [34], [38]; the rest included relevant material in the form of quotations and themes from interviews or focus groups that was used to infer the importance of outcomes from stakeholder perspectives [10], [12], [21], [25], [26], [28], [29], [30], [31], [32], [33], [35], [37], [39], [40], [41], [42], [43].…”

Section: Resultsmentioning

confidence: 99%

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Tochel

Smith

Baldwin

et al. 2019

Alz & Dem Diag Ass & Dis Mo

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Introduction Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease‐modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders. Methods A systematic review sought research that elicited information from people with AD, their caregivers, and health‐care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included. Results Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease. Discussion Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.

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Section: Resultsmentioning

confidence: 99%

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Tochel

Smith

Baldwin

et al. 2019

Alz & Dem Diag Ass & Dis Mo

View full text Add to dashboard Cite

show abstract

“…While popular in responding to some chronic health issues such as arthritis and diabetes, these programs have been slow to be adopted in dementia care although the few attempts to adapt them to dementia demonstrate their potential applicability (i.e., Martin et al, 2015;Mountain, 2006). This is despite increasing research demonstrating the continuing abilities of people with dementia to find effective ways of coping, to live well, and to even become self-advocates (Bartlett, 2014a(Bartlett, , 2014bClare, 2002;MacRae, 2008).…”

Section: Introductionmentioning

confidence: 80%

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

et al. 2016

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Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia 'live well' with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 13 care partners, and three service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around four inter-related themes: creating safe spaces; maintaining voice and being heard; managing the balancing act; and the importance of solidarity Underpinning these discussions was the fifth theme, recognition that 'one size doesn't fit all'. Overall an important finding was that the presence of family care-partners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited.

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“…David's perceived role at the dementia support group, helping others but not needing help himself, underscores the potency of these social norms. This could represent the goal to resist societal constructions of dementia that could position him in a ‘helpless victim role’ (MacRae ). Maintaining a sense of personal contribution could also reinforce David's position within the spousal relationship, thus maintaining a relationship of equals and resisting a carer/cared‐for relational configuration.…”

Section: Subjective Perspectivesmentioning

confidence: 97%

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

Tolhurst

Weicht

Kingston

2017

Sociology Health & Illness

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The concept of personhood developed by Tom Kitwood highlights that the experience of dementia has relational dimensions that transcend the neurodegenerative impacts of the condition. This relational focus, however, has been narrowly conceptualised, with the impact of broader sociocultural factors on experience underplayed. The empirical exploration of interaction also requires reinforcement: a tendency for dyadic studies to portray findings in an individualised format hinders the interrogation of interpersonal negotiations. This article draws upon qualitative research that employed a joint interview approach, interviewing men with dementia and their spousal carers together. The focus on a dyadic case study from this research enables methodical exploration of the experience of living with dementia. This is realised by considering the socially-framed perspective of each person, and then how their perspectives are interwoven within interactional exchanges. This provides a platform for the evaluation of the current decontextualised notion of personhood and its implications. It is concluded that a sociologically-informed perspective can help to reinforce the academic understanding of personhood.

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‘Making the best you can of it’: living with early‐stage Alzheimer's disease

Cited by 47 publications

References 27 publications

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

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