Care Buddy


Role:

UX Researcher

Tools:

Interviews

Surveys
(Google Forms)

Data Analysis
(Tableau)

Open IDEO Caregiving for Dementia Challenge involved identifying the everyday hurdles in dementia caregiving and catalyzing innovative solutions for overcoming these hurdles. For an analytical methods class, we took inspiration from this challenge. Our research project analyzed the effectiveness of mentor-based programs in helping a dementia caregiver.



Research Question

Are mentor-based programs effective in guiding, assisting and helping a caregiver adapt to caring for a loved one with dementia?

This research attempts to examine how effective such a system might be to ease caregiver stress and alleviate anxiety. Having a friend or a mentor who has been in the same shoes as the caregiver gives them a safe space to vent and discuss their problems and issues. Communicating and confiding in someone who has been through the experience of a caregiver themselves can truly relate to a caregiver and their problems.

Who is a mentor?

A mentor is intended to be a former caregiver or a medical practitioner who has had a substantial amount of experience caring for patients with dementia. Such individuals can then interact with the caregivers and initiate communication which will help them stay strong and resilient in the face of hardship.

Background

What is Dementia?

Dementia is the loss of the mental abilities and memory loss which causes hindrance in one’s daily life. Broadly, the symptoms include forgetfulness, limited social skills, and thinking abilities so impaired that it interferes with daily functioning.

The following image shows the statistics for dementia patients and caregivers.


What does this mean for Caregivers?

80% of all dementia care is delivered by families and relatives. Most of these people are thrust into their caregiving responsibilities with minimal understanding of what Dementia is.

The lack the skills and knowledge leads to detrimental effects on mental and physical health such as depression, anxiety, sleep disturbance, hospitalization, mortality. As a result, the path of the caregiver’s life changes as drastically as the patient’s.

Process

Defining Scope

Given the limited time we had, we decided to limit our scope to focus on

  • First generation, early onset and recently diagnosed dementia patients
  • Dementia caregivers in the Greater Seattle Area

Identifying Existing Resources

These are some of the resources we found:

Our next logical step was to look for organizations which involved communities of dementia patients and their caregivers.

Through our analysis, we realized that many Frontal Temporal Dementia (FTD) support groups do not exist in Seattle and there is a need for such mentor-based programs.

Identifying Data Sources

Qualitative analysis was guided by

  • Interviews on the UW Campus
  • Interview with the Social Worker at the UW Memory Brain Wellness Centre
  • Blogs and 467 Caregiver transcripts provided by the professor

Quantitative analysis was mainly guided by the online survey which was conducted on approximately 150 people

Research Plan


Preliminary Research

  • Understanding the reaction of the general public in a well-educated environment to a sensitive topic such as Dementia and caregiving

Quantitative Analysis

  • Investigating opinions of caregiving and non-caregiving population in Seattle

Qualitative Analysis

  • Understanding current resources and limitations for early onset/just diagnosed cases of dementia in Seattle Drawing themes from caregiver interview transcripts using affinity mapping

Ethical Considerations

  • Verbal consent was obtained during on-campus interviews.
  • Written consent was obtained from the UW Brain and Wellness Center social workers
  • No personally identifiable data was collected during the survey or the interviews to avoid bias and maintain anonymity
  • Participants were given the choice to refuse or withdraw from the survey and interviews at any time and were made to understand that this was a space where they could openly discuss their opinions
  • Data that was obtained from surveys, interviews and consent forms were kept securely and was destroyed at the end of the analysis

Analysis

Quantitative Analysis

We created an online survey using Google Forms which was the basis of our quantitative analysis for which we got 146 responses.

We arrived at the following conclusions:



For 31.5% of the people who have dementia caregiving experience we discovered that:

  • Emotional distress is a major problem
  • Assistance in the form of counseling would be preferred
  • In-home assistance is preferred over virtual assistance

For 68.5% of the people who do not have dementia caregiving experience we discovered that:

  • They will consider counseling as a means to alleviate suffering

Qualitative Analysis

We constructed an affinity diagram using the transcripts from the interviews. This helped us identify the emergent theme in this problem space - changing family dynamics due to caregiving responsibilities

The qualitative analysis helped us arrive at the following conclusions:

  • There was a knowledge gap about dementia as identified by on-campus interviews
  • There was an increased family conflict arising due to caregiving responsibilities understood through affinity diagrams
  • Through the interview with the social workers, we realized a limited number of “in-home” resources for caregiver support currently exist

Recommendations

Based on our findings we suggested the following recommendations

  • More support groups with “in-home” assistance/volunteer programs are needed in order to help caregivers cope up with emotional stress
  • Contact information for support resources needs to be more accessible in order make people aware of the resources available to them locally.
  • Existing FTD support groups can conduct community workshops/sessions in different parts of Seattle to increase awareness
  • A probable collaboration between volunteer support groups and transportation mediums around them to ensure ease of “in home” volunteer assistance

Some of my other work...