Quality of Life
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Quality of life in Alzheimer´s disease [39] |
13-item tool
Addresses mood, cognitive, and functional ability, activities of daily life and quality of relationships with family and friends
Uses a 4-point Likert scale ranging from “poor” (1p) to “excellent” (4p) with a maximum score of 52
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Both the spouses or partners individually |
Caregiver-Related Quality of Life
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Carer Quality of life [40] |
7-item tool
Addresses 5 negative and 2 positive dimensions of providing informal care
Uses 3-point Likert scale from “a lot” (0p) to “no” (2p) for the negative dimensions and reversed scale for positive dimensions. The higher the score, the better the care situation
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Partner or spouse caregiver |
Self-efficacy
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General Self-efficacy Scale [43] |
10-item tool
Assess coping skills and adaptation to situations
Has a four choice response ranging from “not at all true” (1p) to “exactly true” (4p); Scores are summarized to a total score, and a higher score indicates a higher sense of self-efficacy
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Both the spouses or partners individually |
Interconnectedness
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The Inclusion of Other in Self Scale [42] |
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Both the spouses or partners individually |
Mutuality
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Mutuality Scale [41] |
15-item Mutuality Scale
Includes four dimensions—love and affection, shared values, reciprocity and shared pleasurable activities
Rated on a 4-point Likert scale between 0 “not at all” to 4 “a great deal”
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Both the spouses or partners individually |
Health and social care service use
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Service use questionnaire |
The service use questionnaire was adapted from current service use questionnaires held by the investigators, it will be refined by consultation with the study service user group
Covers key health and social care services
Assesses the range of services used as well as the frequency of use
The measure will be administered by the researcher at the baseline and end of follow-up assessments
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Both the spouses or partners individually |
Health status
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EQ-5D-5L (EuroQol health measure with 5 levels of severity for 5 dimensions) [44] |
Has a 5-dimensional structure (mobility, self-care, usual activities, pain or discomfort, and anxiety or depression)
Each dimension has 5 levels: no problems, slight problems, moderate problems, severe problems, and extreme problems
Allows estimation of quality-adjusted life years
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Both the spouses or partners individually |
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DEMQOL (Measurement of health-related quality of life for people with dementia) [45] |
A condition-specific measure of health-related quality of life for people with dementia
Can be completed with the person with dementia or a main caregiver
The measures cover 5 domains: daily activities and looking after yourself, health and wellbeing, cognitive functioning, social relationships, and self-concept
Preference weights are available to allow estimation of quality-adjusted life years
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Partner or spouse with dementia |