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Título
Perceived needs and support services of families of peoplewith dementia
Autor(es)
Palabras clave
Health facilities and services
Quality of life
Fecha de publicación
2021-12-31
Editor
Alzheimer's Association
Citación
Yurrebaso, A., Orgaz, B., Montes-López, E., Picado, E., del Álamo, N., y NEUROQUALYFAM group (2021) Perceived needs and support services of families of people with dementia. Alzheimer´s & Dementia, 17(s10), e052519. https://doi.org/10.1002/alz.052519
Resumen
Background: Dementia is one of the most important causes of dependencyworldwide.
These patients require constant care. This care ismainly provided by the families. Each
family has specific needs and demands specific support services. To improve their quality
of life, the family should be considered in the development of strategies that contribute
to the provision of support services for them. Considering this, the objectives
of this work are to analyse the support needs of these families, as well as the services
they access.
Method: The FQOLS-NDs instrument (Badía et al., 2020) was applied by telephone to
a sample of 163 relatives of people with dementia in the Spain-Portugal cross-border
area. The main characteristics of the research participants are: 69.9% arewomen, aged
between 28 and 87, and do not work (63.8%). They aremainly daughters/sons (59.5%)
or partners (32.5%) of the person with dementia. In addition, they are mostly their main
carers (95.1%) and live with them (74.8%).
Results: The main research findings reveal that: 1) The support services most needed
by families are information about the disease (53.4%); information about support services
(52.8%), and information about where to get them (44.8%). 2) Family members
report not being able to access the support services they need. Among them, those
to which more than 80% of families do not have access stand out. These are support
groups (92.3%), psychological help (90.3%), family respite (85.5%) and spending money
(81.1%). 3) There are few support services that families need and consider that they
have sufficient access to. The most positive data reveal that only 18.4% of participants
perceive the information they receive about the disease as sufficient; only 16.3% consider
that they have enough help to run the household, and only 12.8% claim to have
access to sufficient information about legal rights.
Conclusion: Families are not receiving the support services they most need.Moreover,
they do not value the services they access as sufficient. References: Badía, M., Orgaz,
M.B., González, E., Vicario-Molina, I., Gómez-Vela, M. and NEUROQUALYFAM group
(2020). Family Quality of Life Scale - Neurodegenerative Diseases.
URI
ISSN
2352-8737 (online)
DOI
10.1002/alz.052519
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