Abstract
Aim: To determine the perceived needs of carers of non-institutionalized family members that suffer from dementia. Methods: Two-steps qualitative study by focus groups of relatives in three centres of different characteristics from the Girona Health Region (step 1) and two in-depth interviews with significant professionals in dementia care (step 2). The analysis was performed based on the interpretation of the transcribed data and the bottom-up coding of categories and themes. The information was triangulated and coding was agreed upon. Results: There were three groups, 26 main carers of community-dwelling relatives with dementia in step 1 and two in-depth interviews with dementia-specialised healthcare and social care professionals in step 2. The demands were categorised according to three main themes: whether they were addressed to the members of care services for more direct and close care, to the agencies for a better joint working and less fragmented system, or to society for better comprehension and social recognition. We emphasize the need for a consultation-liaison reference figure throughout the process both for aspects of greater efficiency in the management of resources and for greater empowerment of carers.
Highlights
Since 2007, the Registry of Dementia of Girona (ReDeGi) has registered the new cases of dementia diagnosed in the different hospitals of the Girona Health Region, a Mediterranean semi-urban region (137 h/km2) in the Northeastern part of Catalonia (Figure 1), reporting a clinical incidence of 6.6 cases per 1000 persons/year [1]
This study shows some interesting barriers of carers, such as difficulties adapting to the intervention’s schedule due to a lack of time or incompatibility with its dates or timetables, difficulties with accessibility, or impossibility to separate from family members to attend due to the absence of relief or a feeling of guilt [16]
For a better illustration of unmet needs expressed by carers, we developed a model
Summary
Since 2007, the Registry of Dementia of Girona (ReDeGi) has registered the new cases of dementia diagnosed in the different hospitals of the Girona Health Region, a Mediterranean semi-urban region (137 h/km2) in the Northeastern part of Catalonia (Figure 1), reporting a clinical incidence of 6.6 cases per 1000 persons/year [1]. The effects on physical and mental health of providing care to a family member with dementia have been widely described [4,5,6]. Describe, and delineate the consequences of dementia care, the costs involved, or the effect of interventions [7,8,9]. To facilitate actions to be taken, needs have been classified as “in need of”: (a) information on the illness; (b) training for the management of activities of daily living and behavioural disorders; (c) emotional support; and (d) access to formal resources. Other authors have grouped them in “patient management needs” (information, behavioural disorders, formal and informal support, etc.) and “personal carer needs” (physical and emotional health, own-life management, etc.) [10,11]. A recent study has identified three key aspects for the adaptation of carers: (1) the stage of dementia, (2) the context of the carer, and (3) the context of where care takes place [12]
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