Volume 23, Number 3

Three Things I Learned About Me and My Lewy Body Dementia

While on Vacation

By Mike Oliver

y recent “bucket list” trip to Europe, planned by my three daughters after

my diagnosis late last year of Lewy Body dementia, brought with it three revela-tions about me and my disease:

1. Human relationships, especially with family, are the most precious thing in this world.

2. Getting away to unfamiliar and stun-ning locations, whether it’s a nearby park or a European vacation, is a sure-fire way to let go of personal worries, at least for a while.

3. I feel in awe and somewhat guilty, but I’ll get to that later.

Fall 2017 First I want to tell you a little about myself and then give you a short briefing on the trip. I am 57 years old and have been a journalist for more than 30 years, working in Florida, California, and now in Alabama at AL.com. I was diagnosed with Parkinson’s last August, but other symp-toms including REM behavior sleep disor-der (which causes people to physically act out their dreams with hitting, kicking, or talking during sleep), hallucinations (though mild), and noticeable forgetful-ness started pointing toward Lewy Body dementia (LBD). A battery of memory and neuropsychological tests has per-suaded my doctors – a neurologist and a neuropsychologist – to believe it is LBD. The disease is like Parkinson’s. In both cases, alpha-synuclein proteins kill neu-rons (brain cells). It’s just that with LBD, the proteins are killing neurons over a wider swath of the brain. Both diseases are marked by tremors, stiffness of joints, muscle spasms, and other movement disorders. Some people with Parkinson’s will develop dementia, but with LBD, the dementia comes early, sometimes before any movement disorders are noticed. I’m also in danger of losing what they call my “executive function” capabilities. For example: I’m getting ready for work, look-ing for my two cell phones. I walk into the kitchen as part of my search, see an apple and think I would like to bring that to work so I start looking for a little grocery bag to put that and other snacks in. My

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From left to right: David Oliver, my brother; Jo Ellen Oliver, my mother; Mike Oliver; and

Julie Vissers, my sister, at the Lewy Body Dementia Association basketball fundraiser

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Three Things I Learned (continued from page 1)

dog barks from outside, so I let him in and then go upstairs to brush my teeth. My wife asks if I have found my phones. “Oh shoot,” I say. A few minutes later, I go to work leaving the apple in the grocery bag on the counter. I call this forgetting what I remembered I forgot.

I’m still working, playing pick-up basket-ball, and am relatively high functioning. However, I crashed my car a month or so ago and have elected to stop driving. Now I hold out hope my diagnosis is wrong, or I will somehow beat this. But as a lifelong journalist, I am also realistic and know in my heart that misdiagnosis is unlikely.

Upon hearing of this diagnosis, my daugh-ters Hannah, 30, Emily, 27, and Claire, 24, planned a “bucket list” European trip for my wife, Catherine, and me. We started in the beautiful city of Malaga, on the southern coast of Spain, where Claire is currently living and teach-ing English to school children. We then flew with Claire to Glasgow, Scotland. The Kelvingrove Art Gallery and Museum there was truly one of the best museums I’ve been to, and it was free! From Glasgow, we took a train to Edinburgh where we stayed for five days in Grassmarket, a place known for its old pubs and restaurants and its presence un-der the iconic Edinburgh Castle. From Scotland, we flew to Dublin, Ireland, meeting our other daughter, Hannah. Among other things, we took a bus ride to see Glendalough, a valley with two beauti-ful lakes out in the country and the Irish Rock ‘N’ Roll Museum. We then did a short stint in London before heading back to Spain, where we capped it off with a trip to Ronda, a whimsical mountaintop town with stunning views.

Now for my three takeaways:

Relationships:

Being on vacation with two of my three daughters, Hannah and Claire, and my wife Catherine, was wonderful. We are also planning a trip with Emily who because of work, did not get to come. Our daughters live far from my Alabama home – Hannah in South Korea, Emily in Boulder, Colorado, and Claire in Malaga. Just hearing their laughter was at the same time joyous and sad. And sad is OK. Sometimes the tears are renewing.

Leaving it Behind:

I lost my cellphone and didn’t bring a lap-top so was forced to live unplugged. As days went by, I quit thinking about work and my disease. I found myself living in the moment. It meant being more present in my time and place, getting into the his-

tory of places I’ve never been. I could let it soak in with-out answering an email or shooting

off a Tweet.

I Feel Awe But Also a Tinge of Guilt:

This is perhaps the most difficult to ex-plain sensibly. But on this trip, I realized I feel guilty. I feel guilty and in awe. I have all these people, friends, colleagues past and present, total strangers offering me support and kindness after learning of my disease. I feel guilty because most people have to wait until their demise be-fore receiving such an outpouring of kind-ness. I’m truly blessed with great friends.

Colleagues and friends at the Orlando Sentinel (where I worked from 1987 to 2000) started a Go-Fund-Me account to help pay for my European vacation. They raised more than double the $2,000 goal. My colleagues at AL.com organized a charity fundraising basketball game to raise money for Lewy Body Dementia Association (LBDA). Survivor guilt? Or is it the opposite? I don’t know what to call it. But I’m in awe, and so grateful it hurts.

“I have all these people, friends, colleagues past and present, total strangers offering me support and

kindness after learning of my disease.”

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RESEARCH UPDATES

Alzheimer’s Prevention Trial The EARLY Trial is an international clinical trial recruit-ing participants from across the USA, Europe, and

Australia. The trial is researching the risk associated with the buildup of amyloid plaques in the brain and aims to evaluate the safety and efficacy of an investiga-tional medication in people at risk of developing Alzheimer’s disease. Stopping or slowing down amyloid plaque for-mation in the brain may delay memory loss associated with Alzheimer’s. It may also help control other changes in the cells of the brain that contribute to the disease. If you take part in the EARLY Trial, your clinical trial doctor will tell you whether you have a buildup of amyloid plaques in your brain. A buildup of amyloid plaques is linked with a greater risk of developing Alzheimer’s disease. If you do not want to know your amyloid status, you will not be able to take part in the EARLY Trial. To learn more about this prevention trial in-cluding participant criteria, see the de-tailed and informative study website at: https://www.earlytrial.com/

Alzheimer’s Disease Neuroimaging Initiative 3

The Alzheimer’s Disease Neuro-imaging Initiative (ADNI) is a study of brain aging that aims to increase the pace of discov-

ery for ways to prevent and treat Alzheimer’s disease. For more than a dec-ade, ADNI researchers have been working to better understand the disease. Now, in

this next step, ADNI3 is studying how quickly brain cognition (thinking) and function changes. ADNI3 is defining how best to measure these changes and shar-ing this information with researchers around the world to help lay a path to-wards greater advancements in preven-tion and treatment of Alzheimer’s. The study is enrolling participants across the United States and Canada who are 55 to 90 years old, have little or no memory concerns or have a diagnosis of early-stage Alzheimer’s disease or Mild Cognitive Impairment (MCI). For more information, see the study website at: http://www.adni3.org

Nelotanserin for Potential Treatment of REM Sleep Behavior Disorder in LBD

In our cover story, Mike Oliver references REM Sleep Behavior Disorder as one of the symptoms that contributed to his diagnosis of Lewy Body Dementia (LBD). This placebo-controlled clinical trial is testing the effectiveness of a drug, Nelotanserin, in treating this disorder. The clinical trial occurs over the course of approximately 10 weeks and is at sites across the USA. To learn more about the study, visit the website at: http://studies.clin-edge.com/rbd_lbda/ or call Axovant Neurology Solutions at 833-600-0350.

The Lewy Body Dementia Association recently pub-lished a resource “Lewy Body Dementia: The State of the Science” which aims to provide an easy-to-read overview of LBD and key

major findings to date in LBD research. You can read or download the report at: https://www.lbda.org/StateoftheScience

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Caregiver? Care Partner? Carer? What’s in a Name?

ditor’s note: In the last issue of Perspectives, I published a letter to the

editor from Arlene Huhn of the Alzheimer Society of Alberta and Northwest Territories in which she expressed interest in seeing my use of the term “care partners” instead of caregivers in the newsletter. Since I started publishing Perspectives in 1995, my intent has always been to be a voice for people with dementia and to learn from them their evolv-ing issues and concerns. I can’t recall how or when I became familiar with the term care partner, but I have often heard from people with dementia of their need to be seen as a person, not a patient, and as someone who can still give and not just receive. Some have very strong opinions about language; other do not. So I requested feedback from readers, (people with dementia, their loved ones, and pro-fessionals) about the use of language to describe caring roles. The follow-ing are some replies! My sincere thanks to all who participated in this infor-mal survey. Feedback from Individuals Living with Dementia

Shayna Bowling and Arlene Huhn facili-tate two early-stage dementia support groups in Edmonton, Alberta in Canada. Their participants discussed the different terms. At first many said they liked the term caregiver best because it was most familiar, but they didn’t have a lot of posi-tive things to say about it. One partpici-pant stated, “It sounds like a hired per-son. That’s the lady who comes with the medicine.” However, the term “care part-ner” sounded unfamiliar and strange. Af-ter some reflection on words and their use, group members shared that the term “caregiver” is impersonal and more of a one-way street. They gave new considera-

tion of the term care partner:

“My husband is my partner. It reflects a more mature relationship, accepting re-sponsibility for what they can give and we can give. My family, my grandchil-dren are also care partners.”

“I like it a lot compared to caregiver. We’re a team!”

“I have a partner. I am not alone. I have abilities.”

“It means you’re involved.”

“It means empowerment.”

We also heard from Judy Fillippoff, Early- Stage Programs Coordinator for the Alzheimer’s Association’s Northern California and Northern Nevada Chapter who summarized comments from partici-

pants in four early-stage de-mentia groups. Most participants liked the term “care partner” as it seems more personal, is a good term for family relation-ships and makes them feel like

they are more “together” in their efforts. Many found the term “caregiver” to be more abstract, a feeling of “we owe you, and take care of you out of obligation, but it is a burden.” This term felt like it de-scribed an unrelated care provider who is paid to assist. One participant stated, “I would only use the term ‘caregiver’ for someone that I paid to help me.” Another participant, however, was very comforta-ble with the term caregiver and stated, “It’s more descriptive. Helpmate is okay also, and maybe spouse. I also like ‘the leader of our pack!” Some men in these groups preferred simply to use “my wife” over the words caregiver, care partner, or (continued on page 5)

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Caregiver? Care Partner? Carer? (continued from page 4) carer. One man stated, “My primary sup-port is my wife and I call her my wife! If someone else is helping me though, I call them a caregiver.” Feedback From Those Caring for a Loved One with Dementia Jon, who is caring for his wife, echoed similar feelings of persons with dementia who prefer the terms husband or wife. He wrote, “My wife has Alzheimer's and I am the one who cares for her and tries to make sure things go right. However, the word caregiver doesn't fully express what I do. I think back to our wedding vows (50+ years) and remember the part about ‘in sickness and in heath.’ With that in mind, I think the words husband and lover includes my care giving role and that is my preferred terminology.”

In a support group facilitated by Jayne Slade and Joyce Camiel at the University of California, San Diego Shiley-Marcos Alzheimer’s Disease Research Center, most participants agreed that they don't refer to themselves as the “caregiver” in front of their loved one although they think of themselves as caregivers and use that term when discussing their role with others. Although the reason for not using the term in front of loved ones was not provided, it illustrates concerns for the feelings that different terms might evoke.

Some participants had different terms they identified with including “care advo-cate” or “care manager (since I am managing the situation).” One woman stated, “My husband refers to me as OIC (Officer in Charge)!" The term ‘care part-ner’ was new concept for many in the sup-port group. Thinking about it for a while, more and more people said they liked it and might consider using it. One partici-pant stated, " Care partner shows there is a relationship."

A husband from a support group spon-sored by Alzheimer Society of Oxford in Ontario, Canada, shared similar feedback: “If you asked my wife, I don’t think she’d call me her caregiver. She might be okay with the term care partner, because it suggests we’re looking after each other.”A wife shared a similar thought: “I think my husband would also prefer the idea of support rather than care, especially as it refers to me and what I do to lend a hand. He wants to feel autonomous and independent, and he tries very hard to not create work for me. He is also not really aware of all I do to care for him.” The support group facilitators, Anita Dahl and Elizabeth Barrie noted that most peo-ple were comfortable with terms that fo-cused on support, rather than care. Of the three terms (caregiver, care partner and carer) care partner was the one people were most comfortable with.

Wendy, a daughter from San Diego, wrote in about the need to acknowledge reciprocity in the relationship. “Intuitively the term care partner seems to give a sense of sharing and being respectful of both the person with Alzheimer’s and the partner. The term “caregiver” seems a very one-way term, not taking into ac-count the efforts, helpfulness, and willingness of the one the care partner is working with. It must be such a fluid and dynamic relationship between two or more people. It’s important that our lan-guage reflect that.”

For many loved ones, that feeling of reci-procity can be challenged as the person with dementia advances and needs more assistance. Of the 25 attending Lorry Parker’s support group in Canyon, Texas, all but one preferred the term caregiver. These participants have loved ones at all different stages of the disease. Comments include that the term caregiver “covers it all - that's what we do – with love.”

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Don’t Look Away: Using Storytelling to Give Voice,

Find Connections, and Change Perceptions

Lauren Dowden, MSW, LCSW

n the early months of 2014, partici-pants of Chicago’s Northwestern University Cognitive Neurology and

Alzheimer’s Disease Center [CNADC] sup-port groups for early-stage dementia [one for persons with a diagnosis and one for care partners] expressed several common concerns: 1) they wanted more programs that supported people with early-stage de-mentia, noting the stigma and isolation that often accompanies the diagnosis; 2) they observed that the early-stage experi-ence was not well represented in the

media, which predominantly focuses on later-stages; 3) the term “caregiver” invalidates the many dimensions of their relationship. These concerns inspired the development of the storytelling workshop, which was to create a meaningful shared activity for persons living with dementia and their partners, offering them a way to share experiences of daily living, advocate for resources, and improve understanding around early-stage dementia.

The CNADC with the help of a master storyteller offered a storytelling pilot workshop with two couples (a person with Alzheimer’s disease and his or her spouse) to assist in the co-creation of a story that they then shared together at the 2014 Alzheimer’s Day. The storytellers’ reflec-tions on the writing process revealed how the process of reminiscing about the past to create their story allowed the couple to spend time together in a way that helped maintain their ‘couplehood’ as husband and wife, as opposed to being identified as caregiver and patient. One storyteller ex-pressed, “It makes you focus on the fabric of your relationship that you never stopped to think about. It’s what really holds us together.”

The stories shared have included ones about notable firsts in their lives, such as

the first time the couple took a child to college, while another pair shared the first time they had travelled to Europe to-gether. Other stories, recall times when they first met, which included a sibling recounting the first time she saw her younger sister. The participants are encouraged to choose stories that they feel empowered to share with oth-ers, some of which are humor-ous and others where the cou-ple explore a time in their lives that has challenged them and ultimately helped to strengthen their relationship.

Since the pilot program, the project has enrolled more participants and has aimed to research and explore the impact of the storytelling workshop on their relation-ship and communication. Participants, usually 2-to-3 pairs per workshop, meet for 8 weeks for 1.5 hours. Using in-class writing, at-home assignments, and group feedback, couples create their shared story

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Judy (center) and her daughters, Jane (left) and Rhiannon (right), shared their co-created story at the 2016 CNADC Alzheimer’s Day, an

annual educational forum for scientists and the public.

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Don’t Look Away (continued from page 6)

together. The stories are presented in the final session and eventually to the public, if they choose. Twenty people (10 pairs) have participated in the storytelling work-shop from the Chicagoland area, Indiana, and Michigan. Couples have included spouses, siblings and parents and children ranging in age from 34 to 80. Preliminary findings on the impact of the storytelling workshop include couples noting a strengthened relationship as well as the pairs developing new relationships with the other participants. Also, the research reveals that the workshop invites the participants to adjust to the multiple changes and losses they are experiencing in a safe and supportive environment. One participant shared, “It gave us a chance to talk about things in a way that we maybe wouldn’t have been prompted to before.”

The storytelling families have collectively shared their stories with over 1,500 peo-ple in the Chicagoland area including medical and other healthcare profession-als, students, scientists, and community members. Feedback from audience parti-cipants reflects a deeper understanding of some of the experiences of a family living with Alzheimer’s or a related dementia. One student shared, “We focus so much on the clinical picture…it’s so helpful to be pulled back into the real world and hear what happens when they walk out of the doctor’s office.”

The storytelling program has been fea-tured on the TODAY show: https://goo.gl/sAjLMn

and in the New York Times:

https://goo.gl/GftW8e

For more information about this program, please contact clinical social worker and storytelling facilitator: Lauren Dowden, MSW, LCSW at lauren.dowden1@northwestern.edu.

Caregiver? Care Partner? Carer? (continued from page 5)

Others noted that the word caregiver is “more universal and understood by oth-ers” and that “the word seems more com-passionate.”

For nearly all individuals who shared comments, both those with dementia and those in a support role, the term “carer” was an unfamiliar term and did not re-ceive favorable feedback. This is likely due to the responders all being from the USA or Canada and the word “carer” is largely a widely recognized term in Great Britain. So, it is always important to be culturally aware of language use in re-gions across the world.

Two professionals who sent in comments shared this perspective. Clinical Social Worker and educator Beth Spencer, LMSW wrote, “I use both care partner and caregiver depending on the situa-tion…Whenever possible I encourage the idea of a partnership but not everyone buys into that. And of course it changes with progression of the disease.” Grace Raniga Martin, RN, writes, “I do my best to take my cues from the family and use the words they use or seem to prefer.” As this article reflects, there is no one way to approach language and perhaps this is a chance to open up discussion!

Questions to Consider

How do you feel about the terms Caregiver, Care Partner, and Carer?

What comments do you most identify with in this article? Do you disagree with any?

Do you and your loved ones agree on the language that describes your relationship? If not, how can you come to a mutual understanding of the use of caring and respectful terms?

SUBSCRIBE TO Perspectives

Perspectives newsletter is published quarterly and is available FREE OF CHARGE by email. Simply email Lisa Snyder at: lsnyder@ucsd.edu to request an electronic subscription. Please note: Perspectives is no longer available by printed surface mail subscription. You are welcome to print out the newsletter for personal use. To submit an article or for further correspondence, contact Lisa Snyder at: lsnyder@ucsd.edu

Perspectives is published by: Shiley-Marcos Alzheimer's Disease Research Center University of California, San Diego 9444 Medical Center Dr., Suite 1-100 La Jolla, CA 92037 Phone: 858-822-4800 Email: lsnyder@ucsd.edu Editor: Lisa Snyder, MSW, LCSW Editorial Advisors: Staff of the Shiley-Marcos Alzheimer's Disease Research Center Perspectives is published quarterly and is supported by the National Institute on Aging grant P50 AG05131. Copyright 2017. Electronic formats may be printed for personal or professional use, but please do not reprint newsletter articles for other publications without permission. Electronic subscription is free of charge. All articles, unless otherwise cited, are written by Lisa Snyder, LCSW. For citation purposes, refer to the article author, title, and the newsletter’s complete name.