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Exploring the biggest challenges for family caregivers of people with severe dementia
Author(s) -
Shuter P.,
Edwards H.,
Abbey J.
Publication year - 2009
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2009.05.280
Subject(s) - dementia , grief , psychological intervention , coping (psychology) , family caregivers , psychology , focus group , depression (economics) , caregiver burden , psychiatry , medicine , nursing , disease , clinical psychology , pathology , marketing , economics , business , macroeconomics
This approach combines evaluation of the psychometric evidence, with a review of the academic literature for impact, and consultation with clinical experts in the field about the suitability of instruments. The instrument categories reviewed included: dementia staging and descriptive assessments, associated behavioral symptoms, cognition, function, social isolation, health-related quality of life, multi-attribute utility measures, and patient and carer satisfaction with treatment. Five leading instruments in each domain / category were selected for detailed review and judgment based on the following criteria: availability of instrument, psychometric evidence of reliability and validity, availability of normative and clinical reference data, instrument length, administration time and burden, ease of scoring, ability to be used with the various severity levels of dementia, cost considerations, and the applicability for routine care. Results: This detailed review and consultation process resulted in a number of measures being recommended for routine use with dementia patients. As an example, three instruments are recommended for the assessment of HRQOL in dementia; the QOL-AD and the DEMQOL for mild to moderate dementia and the QUALID for late stage dementia only. Conclusions: The poster outlines the recommended measures for each domain of assessment. Additional issues addressed included the use of proxy (informant) measurement and the application of these instruments to cultural and linguistically diverse populations.