Introduction
Methods
Step 1: review of reviews - the lived experience of well-being in people with dementia
Step 2: review - application of key well-being concepts in dementia
Step 3: synthesis
Step 4: review - identifying and categorising self-report measures of well-being in dementia
Findings
Lived experiences of well-being in people with dementia
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Feeling Positive: positive emotional states often experienced in the ‘here and now’. Includes hopefulness/humour; positive attitudes - acceptance/ optimism.
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Life Having Meaning: making sense of dementia. Shifting perspectives towards existential meanings such as notions of transcendence/spiritual growth.
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Positive Sense of Self: self-worth, sense of identity (‘I am’) and self-efficacy.
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Keeping Going and Being Active: sense of agency – adaptation/resilience; purpose/ autonomy. Demonstrated by active choices to function ‘normally’ and engage purposefully in meaningful activities which enhance positive emotions.
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Good Relationships: positive aspects of interpersonal and social relationships. Includes attachment and connection (a sense of belonging and safety) as well as feeling valued, loved and accepted by others.
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Feeling Well: a cross-cutting theme of feeling contented and satisfied with life ‘as it is’.
Application of well-being concepts to dementia
Synthesis
Conceptual Theme | Domains |
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Emotional Well-Being | • Positive States (n = 7)a |
Positive affect (e.g. pleasure, enjoyment, contentment); positive experience and associated emotion (e.g. humour) and ‘affect balance’ | |
Psychological Well-Being | • Going Beyond (n = 7)a |
Personal strengths (e.g. hope) showing aspects of personal growth, meaning-making or spirituality i.e. a sense of transcending the challenges of dementia. | |
• Agency and Purpose (n = 13)a | |
‘Keeping Going’ and remaining’ Active’. Self-determination, autonomy, goals and achievement; ‘resilience’ (defined as remaining strong in the face of dementia or ‘resisting dementia’)’, through continued engagement with meaningful activity. | |
• Positive Sense of Self (n = 13)a | |
Positive attitudes toward the self as well as perceived continuation of self-hood, including self-efficacy, self-esteem, sense of identity and dignity. | |
Social Well-Being | • Connection and Belonging (n = 6)a |
Experiences of belonging (e.g. close relationships) love, support, appreciation, connection (e.g. meaningful social networks), ‘resilience’ (remaining strong / resisting dementia) through continued social participation, engagement in communities and citizenship. | |
Life Satisfaction | • Valuing Life (n = 2)a |
Reflects a general sense of ‘feeling well’ and satisfaction with life as it is e.g. ‘Are you satisfied with your life?’ [53] |
Self-report instruments for measuring well-being in people with dementia
THEME: EMOTIONAL WELL-BEING | |
• Positive States n = 3a | |
Derogatis Affects Balance Scale (DABS-40) [56]. Reliability and validity with people with dementia reported in authors’ longitudinal study. | |
THEME: PSYCHOLOGICAL WELL-BEING | |
• Going Beyond n = 7a | |
Positive Psychology Outcome Measure (PPOM: Hope - 8-item subscale)b;c [68]. Internal consistency and convergent validity with a dementia sample established by authors. | |
Thriving of Older People Assessment Scale (32-item TOPAS) [72]. Correlates of thriving in dementia explored by authors in a cross-sectional care home study. | |
• Agency and Purpose n = 6a | |
Decision Making Involvement scale (DMI-15)b [76]. Dementia- specific measure of perceived involvement in everyday decision-making - some psychometric properties reported. | |
Engagement and Independence in Dementia Questionnaire (26-item EDI-Q)b [77]. Dementia specific measure – some psychometric properties reported by scale developers. | |
Positive Psychology Outcome Measure(PPOM: Resilience - 8-item subscale)b; c [68]. Dementia specific measure - internal consistency /convergent validity established by authors. | |
• Positive Sense of Selfn = 6a | |
THEME: SOCIAL WELL-BEING | |
• Connection and Belongingn = 7a | |
THEME: LIFE SATISFACTION | |
• Valuing Life n = 6a | |
Short Warwick-Edinburgh Mental Well-Being Scale (7-item SWEMWBS)c [110]. Includes well-being and positive functioning (over previous 2 weeks). Covers optimism, feeling useful, feeling relaxed, dealing with problems, thinking clearly, feeling close to other people and decisiveness. | |
Scales of Psychological Well-Being (SPWB)c [79]. Six sub-scales: Self –acceptance, positive relations with others, Autonomy, Environmental mastery, Purpose in life, and Personal growth; each with 14-items (other versions available). ‘Positive relations with Others’ sub-scale used to measure outcome of a retirement home reminiscence intervention [80]. | |