Quality of life (QoL) broadly refers to a person’s sense of subjective well-being across several domains including physical, psychological and social. Dementia-specific QoL measures assess the efficacy of health and social service interventions for persons with dementia.
As dementia-related changes in cognition may make self-report unreliable, these measures include combined self/informant scales and informant-only scales.
The following measures are covered by DOMS:
- Health-related quality of life for people with dementia (DEMQOL)
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Authors: Banerjee, 2002
Quality Rating: Fair
Time Required: 10–20 minThe DEMQOL is a dementia-specific, self-report measure of QoL designed for persons in the mild-to-moderate stages of dementia. It has 28 items that cover four QOL dimensions: daily activities, memory, negative emotion and positive emotion. The DEMQOL-Proxy is carer-rated and designed for persons with severe dementia, with 31 items covering two domains: functioning and emotion. Both versions have good evidence for discriminant validity and responsiveness.
The DEMQOL and DEMQOL-Proxy are administered by interview of the person and informant, respectively, by a healthcare professional.
Permissions & Cost:
The DEMQOL can be freely used without licence or registration for non-commercial clinical or research purposes.Downloads & Tools:
References
- Banerjee, S. (2002). DEMQOL: A new measure of health related quality of life in dementia. Neurobiology of Aging, 23(1), 154.
- Mulhern, B., Rowen, D., Brazier, J., Smith, S., Romeo, R., Tait, R., Watchurst, C., Chua, K. C., Loftus, V., Young, T., Lamping, D., Knapp, M., Howard, R. & Banerjee, S (2013). Development of DEMQOL-U and DEMQOL-PROXY-U: generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technology Assessment, 17(5), vv–xv, 1–140.
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Quality of life for people with dementia (QUALIDEM)
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Authors: Ettema et al., 2007
Quality Rating: Fair
Time Required: 10–15 minThe QUALIDEM is designed to assess QoL in persons with moderate-to-severe dementia living in residential settings. It has 40 items each rated on a 4-point ordered category scale by an informant based on observations and interactions with the person in the previous 2 weeks. The QUALIDEM assesses nine QoL domains which each comprise a subscale: care relationship, positive affect, negative affect, restless tense behavior, positive self image, social relation, social isolation, feeling at home, having something to do.
A second shorter version of the QUALIDEM, designed for those with very severe dementia, can be administered using a subset of items from the full scale (see attached User Guide) which covers six out of the nine QoL domains/subscales of the original scale, excluding the domains: positive self image, feeling at home, and having something to do.
The Quality of life for people with dementia (QUALIDEM) is administered by interview of the informant by nursing staff who has sufficient familiarity with the patient.
Permissions & Cost:
Free of charge to healthcare professionals for non-commercial clinical or research purposes. For other uses, please contact the original authors to seek permission.Downloads & Tools:
References
- Ettema, T. P., Droes, R.M., de Lange, J., Mellenbergh, G.J., & Ribbe, M.W. (2007). QUALIDEM: development and evaluation of a dementia specific quality of life instrument–validation. International Journal of Geriatric Psychiatry, 22(5), 424–430.
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Quality of life in Alzheimer’s disease (QOL-AD)
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Authors: Logsdon et al., 1999
Quality Rating: Good
Time Required: 5–15 minThe QOL-AD is the most commonly used QoL scale in persons with dementia and has the strongest evidence base for its validity. It was developed for use in those with mild-moderate dementia (especially Alzheimer’s disease), but has also been validated in persons with severe dementia.
The QOL-AD contains 13 items rated on a four-point scale (poor to excellent). Overall scores from self- and informant-reported versions can be calculated separately or combined to form a single composite score.
The self-report version of the Quality of life in Alzheimer’s disease (QOL-AD) is administered via interview with the person (10–15 min); an informant can self-administer the proxy version (5 min).
Permissions & Cost:
Rebecca Logsdon holds the copyright for QOL-AD and permission requests are handled via MAPI Research Trust. Use of the QOL-AD is free for noncommercial purposes. To obtain a free downloadable copy or permission/licensing, register via the MAPI e-PROVIDE online platform.Downloads & Tools:
N/AReferences
- Hoe J., Katona C., Roch B., & Livingston, G. (2005). Use of the QOL-AD for measuring quality of life in people with severe dementia–the LASER-AD study. Age & Ageing, 34(2), 130–135.
- Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (1999). Quality of life in Alzheimer’s disease: patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32.
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Quality of life in late-stage dementia (QUALID)
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Authors: Weiner et al., 2000
Quality Rating: Fair
Time Required: 5 minThe QUALID is designed to assess QoL in persons with moderate-to-severe dementia living in long-term care facilities. It is based on observations made during 30 or more hours over the previous week. The QUALID contains 11 items describing observable behaviours including affective state, behavioural signs of comfort, and engagement in activities and interactions with others, rated on a 5-point ordered category scale. It takes only 5 minutes to complete.
The Quality of life in late-stage dementia (QUALID) is administered by interview of the informant by a professional carer such as a nurse, or another carer such as a family member, who has sufficient familiarity with the person.
Permissions & Cost:
Free of charge to healthcare professionals for non-commercial clinical or research purposes. For other uses, please contact the original authors to seek permission.Downloads & Tools:
References
- Weiner, M. F., Martin-Cook, K., Svetlik, D. A., Saine, K., Foster, B., & Fontaine, C. S. (2000). The quality of life in late-stage dementia (QUALID) scale. Journal of the American Medical Directors Association, 1(3), 114–116.
