scholarly journals Informal support for people with Alzheimer’s disease and related dementias in rural Uganda: a qualitative study

2020 ◽  
Vol 14 (1) ◽  
Author(s):  
Pia Ngoma Nankinga ◽  
Samuel Maling ◽  
Zeina Chemali ◽  
Edith K. Wakida ◽  
Celestino Obua ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Qualitative Study ◽  
Informal Support

scholarly journals 313 - INFORMAL SUPPORT FOR PEOPLE WITH ALZHEIMER’S DISEASE AND RELATED DEMENTIA IN RURAL UGANDA: A QUALITATIVE STUDY

2020 ◽  
Vol 32 (S1) ◽  
pp. 71-71
Author(s):  
Pia N. Nankinga
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Rural Communities ◽  
Qualitative Study ◽  
Perceived Usefulness ◽  
Opinion Leaders ◽  
Informal Support ◽  
Health Concern ◽  
People With Dementia ◽  
Western Uganda

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: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: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 six months and opinion leaders in the community. We excluded trained health workers.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 caregivers 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: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.

Informal support for people with Alzheimer’s Disease and related dementias in rural Uganda: A qualitative study

2020 ◽  
Author(s):  
Pia Ngoma Nankinga ◽  
Samuel Maling ◽  
Zeina Chemali ◽  
Edith Wakida ◽  
Celestino Obua ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Rural Communities ◽  
Qualitative Study ◽  
Perceived Usefulness ◽  
Opinion Leaders ◽  
Informal Support ◽  
Health Concern ◽  
People With Dementia ◽  
Western Uganda

Abstract 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 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 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 six months and opinion leaders in the community. We excluded trained health workers. 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 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.

scholarly journals Perceptions of Treatment Burden Among Elders With Diabetes and Comorbid Alzheimer’s Disease and Related Dementias

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 276-276
Author(s):  
Victoria Vaughan Dickson ◽  
Halia Melnyk ◽  
Rosie Ferris ◽  
Joshua Chodosh ◽  
Caroline Blaum
Keyword(s):  
Alzheimer’S Disease ◽  
Older Adults ◽  
Alzheimer's Disease ◽  
Qualitative Study ◽  
Financial Burden ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Patient Treatment ◽  
Treatment Burden ◽  
Treatment Plans

Abstract Background: An estimated 25% of older adults with diabetes (DM) may have co-occurring Alzheimer’s Disease and Related Dementias (ADRD), complicated by multiple treatment plans and providers. Assessing treatment burden has been limited to patients’ perspectives; little is known about caregiver perceptions of treatment burden despite their important role in personal care and treatment adherence. The purpose of this qualitative study was to describe caregiver perceptions of treatment burden for older adults with DM-ADRD. Methods: This qualitative study was conducted in the formative phase of “Enhanced Quality in Primary care for Elders with DM-ADRD (EQUIPED-ADRD) a pragmatic randomized controlled trial in a large, diverse healthcare system. A diverse sample of caregivers (n=15) of patients enrolled in the RCT participated in interviews about their caregiver role and perceptions of treatment burden of DM-ADRD clinical management. Qualitative data were analyzed using content analysis and themes about treatment burden were compared to domains on the Treatment Burden Questionnaire (TBQ). Results: Caregivers reported high levels of burden related to treatment plans for patients with DM-ADRD. Themes related to complexity and burden of medication management, monitoring (e.g., blood pressure, glucose monitoring), dietary and physical activity regimens, navigating healthcare providers and financial burden were reported. Caregivers also described high levels of emotional burden that was associated with patient’s cognitive decline and family functioning stress. Conclusions: Interventions to reduce treatment burden for patients and caregiver should include activating social/nursing services, respite care and care coordination that may support caregivers especially as patient treatment increases in complexity over time.

scholarly journals Pursuing Both Breadth and Depth in Qualitative Research: Illustrated by a Study of the Experience of Intimate Caring for a Loved One with Alzheimer's Disease

2005 ◽  
Vol 4 (2) ◽  
pp. 20-31 ◽  
Author(s):  
Les Todres ◽  
Kathleen Galvin
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Qualitative Research ◽  
Qualitative Study ◽  
Phenomenological Study ◽  
Loved One ◽  
Complementary Relationship ◽  
Generic Qualitative Study ◽  
Generic Qualitative ◽  
Two Phases

In this article, the authors explore the methodological and epistemological tensions between breadth and depth with reference to a study into the experience of caring for a loved one with Alzheimer's disease. They consider the benefits and limitations of each of two phases of the study: a generic qualitative study of narrative breadth and a descriptive phenomenological study of lifeworld depth into selected phenomena. The article concludes with a reflection on the kinds of distinctive knowledge generated by each of these two phases and the benefits of their complementary relationship with one another.

What causes problems in Alzheimer's disease: attributions by caregivers. A qualitative study

2004 ◽  
Vol 19 (6) ◽  
pp. 527-532 ◽  
Author(s):  
Joni Paton ◽  
Kate Johnston ◽  
Cornelius Katona ◽  
Gill Livingston
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Qualitative Study
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