Diane Peyser Ph.D, RN, NEA-BC

1. The Lived Experience of Relationship Transition in Significant Others Caring for a Partner with Younger Onset Dementia Diane Peyser Ph.D, RN, NEA-BC Nursing Project Director of Magnet- Montefiore Medical Center, Bronx, NY 21st Annual NYU Langone Medical Center Nursing Research Conference June 14, 2017

2. INTRODUCTION • Dementia, most frequently associated with Alzheimer’s disease (AD), is a degenerative brain disease characterized by a decline in memory, language, problem solving, and other cognitive skills that affects a person’s ability to perform everyday activities (Alzheimer’s Association, 2017).

3. STATEMENT OF THE PROBLEM • A distinct subset of dementia sufferers are afflicted with early/younger onset dementia which occurs in individuals <65years of age, accounting for approximately 4-5% of all neurodegenerative brain disorders (Bird, 2015; Alzheimer’s Association, 2017). Retrieved: www.google.com/images/youngeronsetdementiapatients

4. PURPOSE OF THE STUDY • The purpose of this qualitative phenomenological study was to gather knowledge about the experience of relationship transition in significant others caring for a partner with younger onset dementia and discover the meanings significant others ascribe to the transition in their relationships.

5. SIGNIFICANCE • Caregivers of a person with younger onset dementia cope with a disease that is characterized by a progressive decline which is fluctuating in nature and follows an unpredictable course. • Dementia caregivers face an ambiguous loss; a loved one who is physically present but psychologically not the same or absent (Simpson & Acton, 2013). Retrieved: www.google.com/images/youngeronsetdementiapatients

6. DEFINITION OF TERMS EARLY STAGE DEMENTIA • Alzheimer's disease typically progresses slowly in three general stages — mild (early-stage), moderate (middle-stage), and severe (late-stage). (www.alz.org/alzheimers_disease_stages_of_alzheimers.asp) • R Retrieved: www.google.com/youngeronsetdementia

7. STUDY DESIGN • This qualitative study used a phenomenological inquiry approach utilizing Parse’s method of dialogical engagement (Parse, 1998). • The process of dialogical engagement is not an interview but a discussion between the researcher and the participant that focuses on the phenomenon under study as it is expressed by the participant (Parse, 1998). • The phenomenon was examined through the lens of transitions theory (Chick and Meleis,1986).

8. Data Collection Procedures • Data collection began after obtaining IRB approval from Molloy College. • A demographic form was completed by participants after consent was obtained and prior to interviews. • Pseudonyms were selected/assigned to assure confidentiality. • Semi-structured interviews were conducted and recorded with a digital voice recorder, using an interview guide. • A journal was initiated with the first interview to record field notes, analytical memos, and personal reflections. • Interviews were conducted until data saturation was determined.

9. CREDIBILITY AND VALIDITY • Debriefing sessions • Member-checking

10. ANALYSIS OF THE DATA • Colaizzi’s (1978) strategy for data analysis served as the framework for this research study. • NVivo11 software was used in the data analysis of this study. This software enabled the researcher to markup text, make notes electronically and code and re-code as often as needed (Rubin & Rubin, 2012).

11. SELECTED PARTICIPANT CHARACTERISTICS • N=9 • Gender- Female- 100% • Ethnicity/Race- White- 89% Black- 11% • Highest Educational Level- High School- 56% Bachelor’s Degree- 11% Master’s Degree/higher- 33% • # of Years Married- 8-51 years- all in heterosexual relationships • Age of Participants- 49-73 years old (mean of 59) n=8 • Children living in the home- 66%

12. Seven Emerging Themes Navigating Day-to-Day The Struggle to Survive A Kaleidoscope of Feelings A Solitary Journey The Way it Was Before Dementia Shattered Dreams/ Expectations

13. Theme One:The Way It Was Before Dementia • Each interview was initiated with the prompt: Tell me about your relationship (history as a couple) before your significant other was diagnosed with younger onset dementia. Please share what you are comfortable sharing about intimacy, communication, and other important aspects of your relationship. • The impact of dealing with dementia at this younger stage of life does not, as one participant stated, “ occur in a vacuum”. • What clearly emerged was that things were different.

14. Positive Comments Patty shared: “It was a warm and affectionate relationship. When I had difficulty, when I reached the age my mother died at, I went to a psychologist for six months. And when I came home from the psychologist, I would tell him everything. She (the psychologist) said that was extraordinary. And I’ve had that kind of relationship that’s very open, so that when I came home from doing something, I, even to this day, first thing I’d want to do is tell him ( referring to her husband).”

15. Another Perspective Jane relayed: “It was kind of on the stressful side. He was a salesman on the road and he wouldn’t get home until seven, eight o’clock at night. So needless to say with three children, our relationship kind of went very separate ways because he was never there. When he was there he was exhausted.”

16. Theme Two:A Maze of Uncertainty • Why is this happening? • Getting a Diagnosis • Interactions with Healthcare Providers • Things are Constantly Changing

17. Why is this happening? Lynne stated: “I took it as disinterest. M… liked to smoke some marijuana so I mean, I thought maybe he was smoking more than he originally was.” Rose described: “The alcohol, the alcohol, the alcohol, that was a big problem. That really –that was the whole problem as far as I was concerned.”

18. Interactions with Healthcare Providers Jane conveyed: “We’d go into his (the doctor) office and I’d say that I gave M. (her husband) the phone, he (M.) went into the basement, he came up and he couldn’t remember where he put it. And the doctor’s response to me was, “My wife yells at me all the time because I lose the phone.” Okay, well, maybe you (the doctor) have dementia then. Like it was, (pause) he was almost like poo-pooing what I said.”

19. Theme Three: A Kaleidoscope of Feelings • Anger • Overwhelmed • Guilt • Embarrassment • Fear • Hope

20. Guilt Woody summarized what many of the participants expressed: “I noticed some things and I feel real bad because I didn’t pick up on it. But then I started noticing some other things and like I said, I feel bad because I just didn’t pull it all together. We would go driving, some place where I knew he would know how to get to and he would get a little turned around …

21. Hope Doris conveyed a sentiment shared by many of the participants: “I just can’t have all this information and knowledge and everything and not do something with it. It fascinates me. How do you not get it? It will be my mission, this is why I was, that it was divine intervention when you (this researcher) called me. I’m like God, finally, I think it’s great, I do. But I’m not expecting to change the world. But if I can help one person, then I’ll do that.”

22. Theme Four: Shattered Dreams/Expectations • Role change • Loss of couplehood • Loss of partner • Loss of financial security • Changes in intimacy

23. Role Change Jane described: “But here I am an at-home mom, babysitting other kids. All of a sudden, we’re going to have no health insurance. So at the end of the summer, I told everybody, I couldn’t do it anymore. I had to find a full-time job, which took me forever to find.”

24. Changes in Intimacy Doris declared: “I take care of a living corpse. He’s gone. I just go through the motions and that’s it. There’s no relationship. I mean there’s no intimacy of any kind. I used to be fun, joyous, and happy. You know we used to do everything together.”

25. Theme Five: A Solitary Journey • Stigma of Younger Onset Dementia • Everything Looks Okay to Others • Spouses Perception of Self

26. Stigma of Younger Onset Dementia Doris compared Alzheimer’s to mental illness. “Obviously, if he had a physical ailment, people understand more. But when you don’t see it, it is worse. That’s the stigma of mental illness. I always say, you’d be way better off, having a Chemo drip. I’d have 60 people on the cell saying, I’ll help you. Dementia is such a bad word…”

27. Stigma of Younger Onset Dementia Woody described: “It’s just so humiliating because people do not really understand about younger onset. When you tell them he has Alzheimer’s, the first thing they say is he is too young. He can’t have it. Yes, he can. There are people as young as 30, 45 who have it.”

28. Theme Six: The Struggle to Survive • Caregiver Needs • Impact on Family and Friends • Tipping Points • Safety Concerns • Facing Changes

29. Caregiver Needs • Sally stated: “I don’t sleep because he asks me all night long what time it is. I quit the gym because I’m too tired to get up because I’m up all night long. He constantly wakes me up to ask, “Who’s sitting over there?” or “Why are there spiders on the ceiling?”

30. Impact on Family and Friends Jane described: “My youngest said: “If Daddy forgets my name I will kill myself.” It was a battle with her to go away to college because she thought he would forget her.” Lynne declared: “You know people seem to fall away after a while. It’s the disease is too long. That’s how I put it. Some of my best friends, I don’t even speak to anymore.”

31. Theme Seven: Navigating Day-to-Day • Living in the Present • Adult Day Care • Support Groups • Ways of Coping

32. Support Groups Doris was the only participant who had experience with using an on-line support group. “That’s why I’m on this Facebook support group. It’s a caregiver group for FTD (frontotemporal dementia) and other dementias with younger onset. Everyone’s kind of in that same age. So the scary part is we started two and a half years ago with about 79 people and we were talking the other day and now there’s like 910.”

33. Significant Findings in this Study • Work outside of the home was a positive coping strategy. • Role change was associated with changes in sexual intimacy. • Negative impact on adolescent and young adult children living in the home.

34. Significance for Nursing Research • The findings from this research may be utilized to assist significant others in coping with the multiple changes occurring in their loved ones and in their relationships with their younger onset dementia partners. • The findings from this study may have the potential to help others facing a similar situation.

35. RECOMMENDATIONS • Nursing education at the undergraduate and advanced practice levels should include curriculum about younger onset dementia. • Additional funding for research is needed. • Studies be conducted which include: ►subjects of both genders, diversity in ethnicity, religion, socio-economic status and same-sex relationship ► both members of the dyad ►all family members living in the home.

36. CONCLUSIONS • Healthcare providers need additional training on the differential diagnoses of younger onset dementia and on how to support/interact with caregivers. • Caring for a partner with younger onset dementia influences relationship transition in heterosexual couples in committed relationships. • Resources are needed to support the unique needs of individuals with younger onset dementia and their caregivers. • Significant others caring for a partner with younger onset dementia want their voices to be heard!!

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