Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021;81(4):1673-1684.
doi: 10.3233/JAD-210167.

A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum

Yan Du  1 , Brittany Dennis  2 , Jia Liu  2 , Kylie Meyer  1 , Nazish Siddiqui  2 , Katrina Lopez  2 , Carole White  1 , Sahiti Myneni  3 , Mitzi Gonzales  4 , Jing Wang  2
Affiliations

A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum

Yan Du et al. J Alzheimers Dis. 2021.

Abstract

Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous.

Objective: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers.

Methods: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes.

Results: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD.

Conclusion: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach.

Keywords: Alzheimer’s disease; caregiver; dementia; peer group; quality of life; support; technology.

PubMed Disclaimer

Figures

Fig. 1.
Fig. 1.
A conceptual model to improve care for individuals with Alzheimer’s disease and related dementias (ADRD) and their informal caregivers.
Fig. 2.
Fig. 2.
A conceptual model, including each care related topics, to improve care for individuals with Alzheimer’s disease and related dementias (ADRD) and their informal caregivers. LO, loved one.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Schulz R, Aranda M, Beane S, Czaja S, Duke B, Feder J, Hinton L (2016) Committee on Family Caregiving for Older Adults, National Academies of Sciences, Engineering, and Medicine, Washington, DC.
    1. Alzheimer’sAssociation (2019) 2019 Alzheimer’s disease facts and figures. Alzheimers Dement 15, 321–387.
    1. Farina N, Page TE, Daley S, Brown A, Bowling A, Basset T, Livingston G, Knapp M, Murray J, Banerjee S (2017) Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimers Dement 13, 572–581. - PubMed
    1. Nelis SM, Wu YT, Matthews FE, Martyr A, Quinn C, Rippon I, Rusted J, Thom JM, Kopelman MD, Hindle JV, Jones RW, Clare L (2019) The impact of co-morbidity on the quality of life of people with dementia: Findings from the IDEAL study. Age Ageing 48, 361–367. - PMC - PubMed
    1. Ernecoff NC, Lin FC, Wessell KL, Hanson LC (2019) Quality of life with late-stage dementia: Exploring opportunities to intervene. J Am Geriatr Soc 67, 1189–1196. - PMC - PubMed

Publication types