Stakeholder Interview Essay

Kayla Demiar

University of Texas at Arlington College of Nursing and Health Innovation

STAKEHOLDER INTERVIEW ESSAY 2

I spoke to Bailey Campbell, a family member of someone living with lewy body

dementia. Ms. Campbell’s grandfather was diagnosed with dementia in 2013 and recently passed

away in March of 2020 due to complications of his disease. The purpose of the project I am

interning with focuses on finding and improving informational resources that family members,

caregivers, and those affected by dementia can benefit from. For the purpose of using the

interview for a better understanding of the information and resources available, I decided to ask

someone who is not an expert in health or dementia. A stakeholder is anyone who has an interest

or concern to an issue, and a family member was an appropriate person to interview. Family

members are major stakeholders regarding dementia and are relatively important to my

cumulative experience project.

After speaking with someone who has personally been affected by the outcomes of

dementia who used resources to help them understand better ways to cope with the disease; I

found many interesting details about the current information set forth on the internet. The

purpose of the project was validated as Ms. Campbell further explained to me that she was aware

of the resources available but did not know how to apply that information. Ms. Campbell stated

that the major challenges facing dementia patients and their loved ones are that the doctors and

other informative websites were vague and left them in confusion. As mentioned previously, Ms.

Campbell was aware of resources available on the internet but only because it was referred to her

family. The Campbell family would visit the Alzheimer’s Association in Fort Worth for more

information and we discussed that she found it much more helpful to speak with them in person.

Ms. Campbell added that her grandfather was overseen by a caregiver but felt that the caregiver

was not adequately trained to care for someone specifically with lewy body dementia.
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Throughout the interview Ms. Campbell mentioned her and her family’s lack of

understanding of the available resources and the information that doctors gave them. I then

explained to Ms. Campbell the purpose of my project and how there are efforts being made to

expand on the resources available that are delivered in a health literate manner. I asked Ms.

Campbell to rate the scale of collaboration public health has in the community concerning

dementia and she did not have any response to give as she was unsure of the public health efforts

being made. Dementia affects 1 in 3 seniors in the U.S., making the disease a public health issue

(Alzheimer’s Association, 2020). Through research, informative websites, and advocacy, public

health efforts are being made. However, to the general public, these are not recognizable as

public health initiatives.

Ms. Campbell would be considered someone of high interest with low power to influence

projects focused on dementia. After discussing throughout our interview, our main concern was

the strong barrier of health literacy and public health communication. Of course, there were other

discussions that are out of my control as a public health student such as financing, housing, and

insurance. However, I can use the main concerns that Ms. Campbell had over her and her

family’s lack of understanding of health information towards improving the resources available

for the general audience to see. Thankfully, those concerns are being addressed through the

health literacy project I am interning with.

The internship I am working with is making several efforts to improve the quality of care

given to dementia patients. I am currently completing readability assessments that the

Alzheimer’s Association will be able to use to modify their information pages accordingly. The

project my team is working on is to improve the training that caregivers and first responders

receive regarding dementia as well. I have the opportunity to use this information form the
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interview to enhance and validate our purpose of the health literacy project. The team will use

this information to continue to find useful and health literate resources to improve the outcomes

of dementia patients, their loved ones, and dementia caregivers.

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References

Alzheimer's Association. (2020). Facts and figures. Retrieved from

https://www.alz.org/alzheimers-dementia/facts-figures