Dataset Information

Learning From People With Dementia What Works Well for Well-Being: Interviews and Focus Groups.

ABSTRACT:

Background and objectives

Previous research has tended to prioritize the condition of dementia when investigating positive lived experiences, while there is no evidence that well-being becomes fundamentally different when living with dementia. The current exploratory qualitative study examined how people living with dementia describe how they realize their well-being, without treating dementia as a central concern, and specifically addressed people who are successful in maintaining their well-being.

Research design and methods

Semistructured face-to-face interviews (n = 16) and 2 focus groups (n = 13) were conducted with community-dwelling older people living with dementia, aged 65-93 years (68% male). Conversations covered contributors to experienced life satisfaction, and life enjoyment, and were analyzed using inductive thematic analysis.

Results

Two main themes described how people realize well-being. (1) To live a fulfilling life, participants engaged in activities in order to feel useful and relaxed, and they engaged with others, by interacting and sharing with others, and relying on others. (2) To have a positive attitude toward life, participants appreciated the good things in their current life, their lived life, and about their own person, and positively coped with difficulties by accepting them as part of life, not dwelling on the negative, and actively addressing difficulties.

Discussion and implications

The results appear to reflect universal ways of realizing well-being, justifying the use of universal models of well-being for people living with dementia. We can learn from people living with dementia that living a fulfilling life and having a positive attitude toward life are key to realizing their well-being.

SUBMITTER: Kloos N

PROVIDER: S-EPMC11308173 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Learning From People With Dementia What Works Well for Well-Being: Interviews and Focus Groups.

Kloos Noortje N Bielderman Annemiek A Gerritsen Debby L DL

The Gerontologist 20240901 9

<h4>Background and objectives</h4>Previous research has tended to prioritize the condition of dementia when investigating positive lived experiences, while there is no evidence that well-being becomes fundamentally different when living with dementia. The current exploratory qualitative study examined how people living with dementia describe how they realize their well-being, without treating dementia as a central concern, and specifically addressed people who are successful in maintaining their ...[more]

PMID: 38953169

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Project description:BackgroundEnabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.MethodsThree scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined.FindingsSix conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia.ConclusionAn assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

Project description:BackgroundAdvance care planning (ACP) is becoming increasingly important in medical care. Some suggest standardized approaches to initiate ACP with all older adults. However, the idea of patient-centered care suggests more nuanced approaches tailored to individual older adults' needs. This study investigated how older adults with different views and needs about ACP can be approached in an adequate and most beneficial way by health care professionals.MethodsWe used questionnaires, interviews, focus groups and informal conversations with older adults, living in their own homes, who volunteered to take part in our research. The research was participatory as we collaborated closely with practice partners and we used the obtained findings immediately and continuously to inform the next steps of our research throughout the process.ResultsWe identified three subgroups of older adults with differential needs regarding ACP-related activities: The first group avoids talking about their needs and wishes for care towards the end of life. These older people benefit from activities, which aim at motivating them to concern themselves with ACP-related topics. The second group consists of older adults who are in principle open for ACP-conversations but do not initiate these themselves. This group either trusts their next-of-kin or their healthcare professional to act in accordance with their wishes or does not bring up the topic in order to avoid confronting relevant others with possibly unpleasant topics. This group of people benefits from information about ACP and from healthcare professionals initiating the ACP process. The third group of older people initiates the ACP process themselves, gathers information, and takes the necessary steps for ACP. With this group it remains relevant to check carefully whether they have indeed taken all relevant steps and shared the information with all relevant involved care institutions and relatives.ConclusionsWe propose a model to simplify adjustments of ACP to individuals' needs. Our suggested approach might contribute to increasing the motivation of older people to engage in ACP conversations if these are more closely related to their own needs. Further, it might also contribute to simplifying the individual shaping of the ACP process for healthcare professionals as our suggested model offers clear guidance for approaching different types of older people in different ways. The suggested approach may in future be used for training health care professionals in the conduct of ACP conversations.

Dataset Information

Learning From People With Dementia What Works Well for Well-Being: Interviews and Focus Groups.

Background and objectives

Research design and methods

Results

Discussion and implications

Publications

Learning From People With Dementia What Works Well for Well-Being: Interviews and Focus Groups.

Similar Datasets

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