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To explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable.
Semi-structured interviews using a topic guide.
Eight memory clinics across four UK National Health Service Trusts; three in London and one in Leicester.
We purposefully recruited a maximum variation sample of people living with dementia from South Asian or White British backgrounds, their family carers, and memory clinic clinicians. We interviewed 62 participants including 13 people living with dementia, 24 family carers, and 25 clinicians.
We audio-recorded interviews, transcribed them, and analyzed them using reflexive thematic analysis.
People from either background were willing to accept needed care and wanted competence and communication from carers. South Asian people frequently discussed needing care from someone with a shared language, but language differences could also be an issue for White British people. Some clinicians thought South Asian people had a stronger preference to provide care within the family. We found that preferences for who provides care varied across families regardless of ethnicity. Those with more financial resources and English language have more options for care that meets their needs.
People of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere.
One of the main health-related worries for older adults is becoming dependent. Even healthy older adults may worry about becoming dependent, generating guilt feelings due to the anticipation of future needs that others must solve. The guilt associated with self-perception as a burden has not been studied in older adults, and there is no instrument available to measure these feelings.
To adapt the Self-Perceived Burden Scale (SPBS; Cousineau et al., 2003) for the assessment of feelings of guilt for perceiving oneself as a burden for the family in older adults without explicit functional or cognitive impairment.
Participants were 298 older adults living independently in the community. Participants completed the assessment protocol, which included measures of guilt associated with self-perception as a burden, depressive and anxious symptomatology, self-perceived burden, and sociodemographic information.
Results from exploratory, parallel and confirmatory factor analyses suggest that the scale, named Guilt associated with Self-Perception as a Burden Scale (G-SPBS), has a unidimensional structure, explaining 57.04% of the variance of guilt. Good reliability was found (Cronbach’s alpha = .94). The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology.
These findings suggest that the G-SPBS shows good psychometric properties which endorse its use with healthy community older adults. Also, guilt associated with perceiving oneself as a burden seems to be a relevant variable that can contribute to improving our understanding of psychological distress in older adults.
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