Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL.

Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument.

Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex.

Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework.

Background: Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia.

Methods: We studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions.

Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review.

Objective: Neurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers' quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions, so using disease-specific instruments has been advocated.

Factors associated with the quality of life of family carers of people with dementia: A systematic review.

Introduction: Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia.