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The lived experience of young onset dementia

UNIVERSITY OF CENTRAL FLORIDA COLLEGE OF NURSING. The lived experience of young onset dementia. Debra A. Hunt, MSN, ARNP-BC Doctoral Candidate University of Central Florida, College of Nursing. Purpose of Study.

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The lived experience of young onset dementia

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  1. UNIVERSITY OF CENTRAL FLORIDA COLLEGE OF NURSING The lived experience of young onset dementia Debra A. Hunt, MSN, ARNP-BC Doctoral Candidate University of Central Florida, College of Nursing

  2. Purpose of Study • Explore the experience of dementia from the perspective of middle-age people living with the disease. • 35-64 years

  3. Study Design • Interpretive Phenomenology • Aims to offer insight into how a person within a given context makes sense of a phenomenon. • The experience of living with young-onset dementia

  4. Sample • N 9 • 8 women, 1 man • between the ages of 41 and 62 • diagnosed with dementia • in the early or mild stage

  5. Recruitment and Screening • Informational flyers • Offices • Chat rooms • Frontotemporal Dementia Association • Two-part screening process • Ability to reflect on illness • SPMSQ

  6. Data Collection • 19 in-depth conversational interviews • 45 – 90 minutes • 2nd interview conducted within 2 weeks of 1st interview

  7. Data Analysis • Van Manen’s analytical approach • Identified revealing statements or phrases • Objects of reflection during second interview • Collaboration • Researcher • Participant

  8. Interpretation and Findings • Feeling frustrated • Fear of slipping away • Loss of personhood • Life interrupted • Finding a sense of security in the familiar • Wanting one’s voice to be heard

  9. Feeling Frustrated • Difficulty getting others to consider that they were genuinely suffering from dementia • Doctors, peers, family members • Symptoms mistook as psychological disorder • Being told to ‘watch and wait’

  10. My doctor told some I needed to see a shrink….I knew something was wrong, but I’m not crazy. • You do so much for everybody…you don’t have dementia….you’re just crazy…you are trying to get attention. • I tried to do better…I couldn’t learn new things….I was fired.

  11. Fear of Slipping Away • Participants recognized changes occurring in cognitive and functional abilities. • described as slipping away, either slowly or by drowning.

  12. I’d take cancer over dementia any day. If you don’t beat cancer, you die pretty quick, but this is awful…you feel yourself slipping away, a little bit, every day. • As the current gets stronger, you try to keep your head above water…you’re fighting like hell just to stay above the water…that’s what it’s like.

  13. Loss of Personhood • Defined by their illness • Without purpose and value • No longer able to contribute in a meaningful way

  14. We are still here…we need and deserve to be treated like we have some value. I feel like an emotional plant, but I’m not a plant. I’m a person. • They told me I could not stay at the hospital because I was a liability…all my years on the job didn’t matter…I was a liability.

  15. Life Interrupted • “The cruelty of dementia” • Declining abilities • Retirement plans are abandoned • Life savings are depleted • Relationships are strained • Family role changes

  16. This disease sucks. My partner has to work so damn hard…My kids have been forced to grow up too fast….They never know what they might come home to. • My wife and I were ready to retire to our cabin on the lake. We can’t do that now…My wife has to keep working…because of me.

  17. Finding a Sense of Security in the Familiar • People with dementia are continually finding themselves in unfamiliar situations. • Comfort from closest or most intimate relationships • Feeling ‘safe’ in one’s home

  18. My husband checks to make sure I haven’t put the ice cream in the microwave or the laundry in the freezer. We laugh about it…Actually it’s not that funny, but he never makes me feel like a fool. • Sometimes when I go out, there are so many noises and smells…I get upset. When I go home I feel calmer, safe…almost.

  19. Our Voices Need to be Heard • Every participant voiced a willingness to help others living with dementia. • They had an awareness of their limitations and they possessed great insight and the ability to reflect on their illness.

  20. Development of Documentary about FTD • Maybe when the doctors see this film, they will start to listen to us. The experts say that we lack insight. We have enough insight to realize that they don’t know much about this disease. • Writing • Chat rooms & social networks • Therapeutic • When I write the thoughts seem to come easier

  21. Implications for Practice • Study findings suggest that middle-age people with dementia want to be involved in productive, meaningful activities. • More focus about the cognitive abilities of people with dementia, rather than on what has been lost • Health care practitioners and policy makers need to capitalize on their abilities and desire to help improve the lives of other people living with dementia.

  22. Future Research • Psychosocial • Quality of life • Families • Children • Writing • Cognitive rehab • Alternate communication

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