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"There is no hope, no purpose." An interview with a caregiver

Insights from an interview with a caregiver.

Photo of Molly Oberholtzer
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The most typical caregiver of someone with dementia is*:

  • Female
  • Non-hispanic caucasian
  • 50- 60 years old
  • Married/in a long-term relationship
  • Works 35 hours a week in a job outside of caregiving
  • Lives in same region as PLWD (person living with dementia) 
  • Is caregiver for a parent
  • Has spent 4+years as a caregiver
  • Is concerned with own health deterioration since becoming a caregiver
  • Communicates with doctors of PLWD and monitors health changes

*All of the following attributes or qualities were seen in over 50% of those surveyed in the 2017 Alzheimer’s Disease Facts and Figures Report. https://www.alz.org/documents_custom/2017-facts-and-figures.pdf

I interviewed someone who matches all of the above except she works 60+ hours a week (outside of caregiving) and describes herself as "married to her horse."

Insights:

  • She didn't want to take on this role, it was a complete life-change that she didn't ask for, and felt forced into. 
  • She wishes it would end and her mother (PLWD) would die, but she's afraid she won't, at least no time soon.  
  • She doesn't feel that she has purpose as a caregiver, she thinks PLWD is being "warehoused" in the skilled nursing facility.
  • She prefers activities that are more scripted and require less improvisation/energy from her. (i.e. going out for manicures vs. dinner) 
  • She wishes she had more activities or ideas for things they can do together that bring moments of joy. 
  • She believes all she can provide is security and joy.
  • She only sought therapy, and took some time for self-care, after she began having panic attacks.
  • She feels guilty for many of her feelings and actions involving her mother. 
  • She is terrified (she would prefer to be euthanized) that she will experience the same memory loss and dementia in 10-15 years. 
  • She is constantly stressed by a seeming onslaught of PLWD related-issues that surface, settle, only for something new to come up.
  • She feels overwhelming feelings of debt and responsibility
  • She experiences some moments of joy, but no hope.
  • She wishes she (or someone) could give her license to back off, to focus on herself and less on her mother.



 



 

What is a provocation or insight that might inspire others during this challenge?

Many caregivers had a rocky relationship with their "loved one" (person living with dementia) before they became a caregiver. They may wish for nothing more than the release from this role, but feel it is a burden they must bear. What are ways to address this sense of hopelessness that caregivers can experience?

Tell us about your work experience:

design research

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Photo of Kate Rushton

Hi Molly,

Thank you for taking the time to conduct the interview and sharing your insights with us. This is very interesting.

Did this lady mention her support network? Does she have someone she can lean on?

'She wishes she had more activities or ideas for things they can do together that bring moments of joy. ' - do you think this lady would be interested in mainly paper-based solutions here e.g. activity books, apps, low-tech tools etc?

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