Informal caregivers (CGs) provide the majority of care to those with dementia at home.
They often experience high levels of stress due to the challenges associated with caregiving and their living environment.
Home-based dementia care setting usually lacks a favorable environment to foster social interactions, or even worse, the stigma is still pervasive around dementia patients.
Family caregivers of those dementia patients are at increased risk for developing dementia themselves and part of the increased risk is attributable to the stress of caregiving.
The purpose of this study was to assess the needs for a small-group, social-model approach to education and stress management for family caregivers of those with dementia.
A structured in-depth interviews with a purposive sample of 20 CGs was conducted based on the Spearman-Brown Prophesy Formula assuming the agreement obtained is 0.49 and reliability is 95%.
All CGs were asked open-ended questions with probes for clarification and additional details.
The recorded interviews were transcribed and processed through thematic and coding analyses.
Word counts were used to analyze interview data to specifically identify CGs’ needs from different aspects which are addressed in the subsequent survey that was designed referring to the emerging problems from the individual interviews and from the existing body of literature and studies.
CR status and context
Type of relationship
CG’s awareness and CR’s diagnosis of dementia
Family caregiving dynamics
Caregiving experience/preparation of CGs
CG past experience
CG education or preparation
Expectation in CG education
Intensity of current role in caregiving
Stressful experience associated with caregiving
Intent to institutionalize
Variation in stress levels with respect to CR status
Coping with stress
Impact of caregiving on social time
Effect of social activities on stress management
Acceptability of different formats of social activities
Suggestions on improving social engagement
Needs for support
Classification of needs
Variation of needs with respect to:
CR status; 2) caregiving mode
What kind of experience did you have in the past in taking care of someone other than the person you are caring for now?
What kind of education or preparation did you get to be a caregiver?
What are your thoughts about caregiver education?
How much time each day could you spend on something other than caregiving tasks?
What do you think about managing stress?
What could be done to improve the opportunities for caregivers to manage stress?
What ways would work for you to manage stress?
What about social activities?
What are any other support you need to provide care to care recipient (CR)?
Number of participants
Relation to CR
Stress is ubiquitous among family CGs although it varies by the stage of their CRs’ disease and the support they can get.
“You are sinking into a swamp - just like stuck in a quick sand, and you get to paddle as quickly as you can, then
you keep sinking and sinking, that's common for CGs.”
Social time and activities have been diminishing, especially social as a dyad has become less possible.
“Socially you'd like to be more involved with people, you miss the dialogue with other people, because you talk to people who doesn't talk, just repeating questions. It's nice to share problems, thoughts, political issues with people, but now it's gone.”
Education is considered essential for stress management, but CGs
prefer to coming out to participate in a program in person rather than through social media.
“To understand the disease, know how disease is progressing, know what's going to happen”
“Education can relieve the stress on any caregiver.”
A CG-CR dyad program being more sensitive to different needs of CGs is desired.
“[I] want to go to AM group, but not many. [I] need somebody to take care of xxx [i.e. CR] if I go.”
“[I] want to find a group facing the similar issue.”
“It will depend on the group, but [it’s] mainly up to her (i.e. CR).”
“[I hope it’s] once or twice a month to spread out for a
Sources of information to support CGs are in demand.
Suggestions on better diet are needed.
There are a variety of programs to support the role of family caregivers of those with dementia, but many programs did not conduct a specific needs assessment before implementation.
Our study tends to show that tailored approaches are needed to address different needs of family CGs for dementia patients.
It is especially critical to identify CGs with high perceived stress burden and recruit them to social engagement programs offered on a large scale.
We are working on developing and expanding community-based program to meet the needs of family CGs and to improve the quality of life for them and their CRs.
Next step: a large-scale survey study
To map the current challenges facing CGs including stress from caregiving, social stigma, financial constraints, etc. as well as their needs for community-based support such as support group, education, stress management program, and so on.
To test and compare factors that associated with the challenges across settings and among different countries.
To classify the needs of CGs with respect to the stage of their care recipients and environmental factors.
Themes in survey
Family caregiving dynamics/background
Caregiver demographic information
Care recipient health status
Caregiver health status
Social support needs
Policy support needs