Experiences of dementia and attitude towards prevention: a qualitative study among older adults participating in a prevention trial

Rosenberg, Anna; Coley, Nicola; Soulier, A; Kulmala, Jenni; Soininen, Hilkka; Andrieu, Sandrine; Kivipelto, Miia; Barbera, Mariagnese

doi:10.1186/s12877-020-1493-4

Cited by 43 publications

(44 citation statements)

References 42 publications

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“…These ndings generally align with the existing literature: for example maintaining independence (50) and enjoyment of activities (51) seem key motivators amongst this group. We also found that an awareness of, and desire to avoid, the consequences of dementia seemed to motivate cognition-protective behaviours (52), whilst other health conditions arose as a possible barrier. Additionally, our ndings extend understandings about the value of social support.…”

Section: Discussionmentioning

confidence: 69%

Planning and optimising a digital intervention to protect older adults’ cognitive health

Essery

Pollet

Smith

et al. 2021

Preprint

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Background By 2050 worldwide dementia prevalence is expected to triple, rising to 152 million. Affordable, scalable interventions are required to support protective behaviours such as physical activity, cognitive training and healthy eating. This paper outlines the development of ‘Active Brains’: a multi-domain digital behaviour change intervention to reduce cognitive decline amongst older adults, and key findings arising from this process. Methods A theory-, evidence- and person-based approach to intervention development was undertaken. Scoping reviews and behavioural analysis contributed to intervention planning. Optimisation involved qualitative interviews with 52 older adults with higher and lower cognitive performance scores. Data were analysed thematically and informed changes.Results The development process synthesised findings from planning and optimisation activities. Scoping reviews and qualitative interviews suggested that the same intervention content should be suitable for individuals with higher and lower cognitive performance. Qualitative findings revealed that maintaining independence and enjoyment motivated engagement in intervention-targeted behaviours, whereas managing ill health was a potential barrier. Social support for engaging in such activities could provide motivation, but was not desirable for all. These findings informed development of highly acceptable intervention content and functionality for target users.Conclusions A digitally-delivered intervention with minimal support appears acceptable and potentially engaging to older adults with higher and lower levels of cognitive performance. As well as informing our own intervention, the insights obtained through our development process may be useful for others working with, and developing interventions for, older adults and/or those with cognitive impairment.

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Section: Discussionmentioning

confidence: 69%

Planning and optimising a digital intervention to protect older adults’ cognitive health

Essery

Pollet

Smith

et al. 2021

Preprint

View full text Add to dashboard Cite

show abstract

“…These findings generally align with the existing literature: for example, maintaining independence [ 64 ] and enjoyment of activities [ 65 ] seem key motivators amongst this group. We also found that an awareness of, and desire to avoid, the consequences of dementia seemed to motivate cognition-protective behaviours [ 71 ], whilst other health conditions arose as a possible barrier. Additionally, our findings extend understandings about the value of social support.…”

Section: Discussionmentioning

confidence: 99%

Planning and optimising a digital intervention to protect older adults’ cognitive health

Essery

Pollet

Smith

et al. 2021

Pilot Feasibility Stud

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Background By 2050, worldwide dementia prevalence is expected to triple. Affordable, scalable interventions are required to support protective behaviours such as physical activity, cognitive training and healthy eating. This paper outlines the theory-, evidence- and person-based development of ‘Active Brains’: a multi-domain digital behaviour change intervention to reduce cognitive decline amongst older adults. Methods During the initial planning phase, scoping reviews, consultation with PPI contributors and expert co-investigators and behavioural analysis collated and recorded evidence that was triangulated to inform provisional ‘guiding principles’ and an intervention logic model. The following optimisation phase involved qualitative think aloud and semi-structured interviews with 52 older adults with higher and lower cognitive performance scores. Data were analysed thematically and informed changes and additions to guiding principles, the behavioural analysis and the logic model which, in turn, informed changes to intervention content. Results Scoping reviews and qualitative interviews suggested that the same intervention content may be suitable for individuals with higher and lower cognitive performance. Qualitative findings revealed that maintaining independence and enjoyment motivated engagement in intervention-targeted behaviours, whereas managing ill health was a potential barrier. Social support for engaging in such activities could provide motivation, but was not desirable for all. These findings informed development of intervention content and functionality that appeared highly acceptable amongst a sample of target users. Conclusions A digitally delivered intervention with minimal support appears acceptable and potentially engaging to older adults with higher and lower levels of cognitive performance. As well as informing our own intervention development, insights obtained through this process may be useful for others working with, and developing interventions for, older adults and/or those with cognitive impairment.

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“…In highly educated and developed countries, cognitive impairments are known as an unavoidable part of normal aging. This increases fear and anxiety in individuals, feelings of hopelessness, and stigmatization (26). In the less developed countries, people accept patients with AD more easily and stigmatize them less (25).…”

Section: Discussionmentioning

confidence: 99%

Stigma Against Alzheimer's Disease In Turkish Population

Polat

Temel

Kayalı

et al. 2021

Preprint

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Introduction: Cognitive, behavioral, and psychiatric disorders associated with dementia cause stigma against Alzheimer’s disease (AD) in both patients, caregivers, and healthy individuals in public. To the best of our knowledge, since stigma against AD is not investigated in the Turkish public, we wanted to evaluate the stigma of healthy Turkish people according to their demographic characteristics in our study. Materials and Methods: 439 healthy participants without any history of neurological and/or systemic disease were included in this cross-sectional observational study. Demographic characteristics and knowledge about the AD of the participants were recorded. A ten-question survey was applied to the participants to assess the stigmatization against AD. Factors associated with the stigma score were evaluated in regression analysis. Results: 253 men and 186 women were included in this study (mean age: 35.7 ± 9.8 years ). Most of them had knowledge about AD (94.3%). Only 18.5% had a family history of AD. Sixty-five percent had married. 95 of 439 persons (21.6%) worked in health fields. 60.6% of healthy participants had a moderate-high stigma against AD. The mean stigma score was 8.95 ± 4.79. Total stigma scores were higher in women and single persons (p = 0.001 / p< 0.001). Healthcare workers expressed the highest levels of stigma (p < 0.001). Age, knowledge, and family history of AD did not influence stigma. Shame, loss of self-esteem, and fear of exclusion were expressed the most. Conclusion: To the best of our knowledge, this is the first study that evaluated perceived stigma against AD in the Turkish healthy population. The higher incidence of stigma among women and single persons can be explained by cultural reasons. Stigma in health professionals may lead to delay in early diagnosis and management of AD. Further studies of perceived stigma are necessary to improve intervention strategies.

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Experiences of dementia and attitude towards prevention: a qualitative study among older adults participating in a prevention trial

Cited by 43 publications

References 42 publications

Planning and optimising a digital intervention to protect older adults’ cognitive health

Planning and optimising a digital intervention to protect older adults’ cognitive health

Planning and optimising a digital intervention to protect older adults’ cognitive health

Stigma Against Alzheimer's Disease In Turkish Population

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