Background
Method
Stage 1: literature review
Stage 2: focus groups
Design
Participants
Inclusion criteria
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People with a diagnosis of dementia according to the DSM-IV-TR criteria (American Psychiatric Association, 2000).
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Capacity to provide informed consent
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Able to communicate in English
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People who identified themselves as an informal carer to a person with dementia.
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Capacity to provide informed consent
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Able to communicate in English
Data collection
Data analysis
Stage 3: expert feedback and revisions
Stage 4: pilot study
Design
Participants
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Diagnosis of dementia according to DSM-IV criteria (American Psychiatric Association, 2000).
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Capacity to give informed consent.
Procedure
Analysis
Results
Stage 1: literature review
Sense of independence and social engagement
Reslience
Hope
Stage 2: focus group
Age M (SD) | Female n (%) | Ethnicity: | Caring for: | |
---|---|---|---|---|
PwDa (n = 9) | 80.56 (±7.13) | 7 (77.8%) | Asian: 1 White: 8 | n/a |
Carer (n = 8) | n/a | 0:8 | Asian: 1 White: 7 | Parent: 3 Spouse: 4 Grandparent: 1 |
TOTAL (n = 17) |
Independence and interdependence: definitions outside of and within dementia
Functional independence: activities of daily living, self-care and decision-making
Remaining active
Social engagement
Resilience and hope
The EID-Q and PPOM
Stage 3: expert feedback and revisions
EID-Q
PPOM
Stage 4 pilot testing
Total | |
---|---|
Gender n (%) | |
Female | 19 (57.6) |
Male | 14 (42.4) |
Age M (SD) | 80.18 (8.27) |
Marital status n (%) | |
Married | 14 (42.4) |
Widowed | 17 (51.5) |
Divorced | 2 (6.1) |
Residing n (%) | |
Community | 30 (90.9) |
Residential Facility | 3 (9.2) |
Ethnicity n (%) | |
White (British) | 28 (84.8) |
White (other) | 2 (6.1) |
Black | 1 (3) |
Asian | 2 (6.1) |
Dementia diagnosis n (%) | |
Alzheimer’s Disease | 13 (39.4) |
Vascular Dementia | 5 (15.2) |
Dementia of mixed etiology | 7 (21.2) |
Unknown sub-type | 8 (24.2) |
Time since diagnosis n (%) | |
< 1 year | 8 (24.2) |
1– 2 years | 3 (9.1) |
2– 3 years | 8 (24.2) |
> 3 years | 6 (18.2) |
Unknown | 8 (24.2) |
Cholinesterase inhibitors n (%) | |
None | 17 (51.5) |
Donepezil | 4 (12.1) |
Memantine | 6 (18.2) |
Rivastigmine | 3 (9.1) |
Galantamine | 2 (6.1) |
Donepezil and Memantine | 1 (3) |
Other psychotropic medication n (%) | |
None | 27 (81.8) |
Anti-depressant | 6 (18.2) |
Internal consistency
Convergent validity
GDS | QoL-AD | |
---|---|---|
PPOM Total: | r = -.562, p = .02 |
-
|
PPOM: Hope | r = -.557, p = .001 | - |
PPOM: Resilience | r = -.312, p = .088 | - |
EID-Q Total | r = -.461, p = .009 | r = .557, p = .001 |
EID-Q: Independence | r = -.447, p = .012 | r = .497, p = .005 |
EID-Q: Engagement | r = -.430, p = .016 | r = .586, p = .001 |