Quality of Life on the Views of Older Family Carers of People with Dementia

Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers

“…If some seem to be better able to face and adapt to the contingencies of dementia than others, an interesting question is how this difference can be explained. In recent literature, this question is often considered from either a burden perspective [ 3 – 8 , 10 ], or a quality-of-life perspective [ 9 , 34 – 38 ], commonly starting from a psychological-behavioural paradigm. They focus on 1) predictors of burden such as stress, depressive and/or grief symptoms; 2) risk factors such as behavioural problems in the care recipient, conditions of the disease and/or poor economic situation; 3) coping strategies of the caregiver; or 4) quality-of-life domains such as health and vitality of the caregiver, supportive social environment, and other resources such as own projects.…”

The development and validation of the Dementia Quality of Life Scale for Older Family Carers (DQoL-OC)

“…It provides valid and reliable outcomes within a single factor structure, similar to other age-specific and multidimensional measures of subjective QoL for older people (Hyde et al, 2003). The 22-item structure represents various QoL domains which are leisure; social and solo activities; physical health; general health; energy and vitality; satisfaction with life and caregiving; identity; and life in general (Bowling, 2005a;Farquhar, 1995;Oliveira et al, 2016).…”

“…The DQoL-OC was developed and validated using a sequential exploratory mixed-methods design, in which a qualitative investigation was initially used to identify the variables underlying the QoL model (Oliveira et al, 2016). An expert panel of four researchers from Individuals were also invited to take part in the re-test reliability arm of the study.…”

“…Therefore they do not cover the age-specific aspects associated with the QoL of older carers of people living with dementia. Aspects, such as concerns about their own health and future; energy and vitality in their care provision; role conflicts in being an older carer; identity; the higher impact of financial situations; confidence in providing care whilst being a frail older person; isolation and loneliness derived from a full-time carer role; and sleep deprivation are some of the issues reported by older carers as being important to their own QoL that are not fully represented in current QoL measures (Oliveira, Vass, & Aubeeluck, 2016). Additionally, current caregiving specific QoL scales contain limitations, for example, in appropriately establishing construct validity and practicality, as well as problems in scale design/measurement, and length (Brouwer, van Exel, van Gorp, & Redekop, 2006;Gallego et al, 2001;Joseph, Becker, Elwick, & Silburn, 2012;Moniz-Cook et al, 2008;Thomas et al, 2006;Vickrey et al, 2009).…”

“…The first study phase generated a large number of scale through qualitative focus groups with older family carers. This helped to identify the particular issues associated with older family carers' QoL and to support the content and face validity of the new tool (Oliveira et al, 2016). These questions reflected a variety of broad QoL domains that are relevant for older people in general, as well as relevant QoL aspects for dementia caregiving.…”