Informal support for people with Alzheimer's disease and related dementias in rural Uganda: a qualitative study.

Dementia and rural communities Informal support

Journal

International journal of mental health systems
ISSN: 1752-4458
Titre abrégé: Int J Ment Health Syst
Pays: England
ID NLM: 101294224

Informations de publication

Date de publication:
2020
Historique:
received: 06 02 2020
accepted: 25 04 2020
entrez: 16 5 2020
pubmed: 16 5 2020
medline: 16 5 2020
Statut: epublish

Résumé

The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia. Our study aimed at establishing the nature of informal support provided for people with dementia (PWDs) and its perceived usefulness in rural communities in South Western Uganda. This was a qualitative study that adopted a descriptive design and conducted among 22 caregivers and 8 opinion leaders in rural communities of Kabale, Mbarara and Ibanda districts in South Western Uganda. The study included dementia caregivers who had been in that role for a period of at least 6 months and opinion leaders in the community. We excluded trained health workers. The study highlights important forms of informal support offered to PWDs such as support in activities of daily living, enabling access to medical attention, recovering misplaced items, provision of herbal remedy, informal counseling, and sourcing carers from other families to offer presence and support in the hope to impact positively on behavioral outbursts and the frustration of living with dementia. The study revealed various forms of informal support that are available for PWDs in South Western Uganda and stressed the role of caregivers and the perceived usefulness of the care provided.

Sections du résumé

BACKGROUND BACKGROUND
The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia.
OBJECTIVE OBJECTIVE
Our study aimed at establishing the nature of informal support provided for people with dementia (PWDs) and its perceived usefulness in rural communities in South Western Uganda.
METHODS METHODS
This was a qualitative study that adopted a descriptive design and conducted among 22 caregivers and 8 opinion leaders in rural communities of Kabale, Mbarara and Ibanda districts in South Western Uganda. The study included dementia caregivers who had been in that role for a period of at least 6 months and opinion leaders in the community. We excluded trained health workers.
RESULTS RESULTS
The study highlights important forms of informal support offered to PWDs such as support in activities of daily living, enabling access to medical attention, recovering misplaced items, provision of herbal remedy, informal counseling, and sourcing carers from other families to offer presence and support in the hope to impact positively on behavioral outbursts and the frustration of living with dementia.
CONCLUSION CONCLUSIONS
The study revealed various forms of informal support that are available for PWDs in South Western Uganda and stressed the role of caregivers and the perceived usefulness of the care provided.

Identifiants

pubmed: 32411294
doi: 10.1186/s13033-020-00364-9
pii: 364
pmc: PMC7206770
doi:

Types de publication

Journal Article

Langues

eng

Pagination

33

Subventions

Organisme : FIC NIH HHS
ID : D43 TW010128
Pays : United States

Informations de copyright

© The Author(s) 2020.

Déclaration de conflit d'intérêts

Competing interestsThe authors declare that they have no competing interests.

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Auteurs

Pia Ngoma Nankinga (PN)

1Medical Simulation Center, Mbarara University of Science and Technology, Mbarara, Uganda.

Samuel Maling (S)

2Department of Psychiatry, Faculty of Medicine, Mbarara University of Science and Technology, Mbarara, Uganda.

Zeina Chemali (Z)

Departments of Neurology and Psychiatry, Harvard Medical School, Massachusetts General Hospital, Boston, MA USA.

Edith K Wakida (EK)

4Office of Research Administration, Mbarara University of Science and Technology, Mbarara, Uganda.

Celestino Obua (C)

5Department of Pharmacology and Therapeutics, Mbarara University of Science and Technology, Mbarara, Uganda.

Elialilia S Okello (ES)

6Mwanza Intervention Trials Unit, Mwanza, Tanzania.

Classifications MeSH