“I can be changed by what happens to me. But I refuse to be reduced by it.”

— Maya Angelou

Imagine that you have just received earth-shaking, life-altering news. Life as you know it will never be the same, and you must now navigate a new set of challenges and obstacles that you never before anticipated. You will experience change in your relationships, your abilities, and the ways in which you relate to the world. For those diagnosed with a neurocognitive disorder, such as Alzheimer’s disease, this experience may be a familiar one, and it might play an important role in the formation of a diagnosis “story” — a personal narrative that surrounds anticipating, receiving, and reacting to a diagnosis. There is great variability in how this story unfolds and the impact that a diagnosis has on an individual and their family. For some, a diagnosis may serve to affirm or validate a suspicion that something is not quite right. For others, receiving a diagnosis of cognitive impairment can feel rather unexpected or even shocking. Furthermore, even if the diagnosis is received early on in the disease course, feelings of grief may arise as you reimagine your future alongside the reality of cognitive losses.

Another important “theme” in your story concerns how this diagnosis was disclosed. Was this information given in a manner that was easy to understand? Were you ever misdiagnosed? Were all of your questions answered? Were you properly connected to educational and community resources to support you? What do you wish was different about your experience? Who or what was helpful? How this information is relayed and what happens in the aftermath can have a profound impact on the overarching narrative.

In addition to how, whether and when this diagnosis is shared also matter. Research suggests that physicians may be reluctant to disclose a dementia diagnosis, even if one is clearly indicated, for various reasons (e.g., lack of effective treatments for dementia; worry over causing psychological distress; insufficient community resources to refer to).¹ This hesitation is contrary to the actual preferences of most patients and their families who indicate wanting to receive this information.¹ Finally, some individuals may not learn of their diagnosis until the disease has progressed considerably², potentially leaving fewer options for treatment and less time for patients and families to plan for advanced care needs.

As a federally-funded research center that maintains a longitudinal study of memory and aging (called UM-MAP), we may inadvertently identify a problem with thinking or memory that the research participant was previously unaware of. Although research evaluations cannot (and should not) take the place of clinical care, we are uniquely positioned to provide individuals with health information that they may not receive otherwise. All participants enrolled into UM-MAP have the opportunity to receive the results from their annual cognitive assessment and learn their “research diagnosis” or research grouping (e.g., cognitively normal, mild cognitive impairment, or dementia). We take great care with the disclosure of this important information and ensure that we are delivering this research feedback in a manner that is ethical and responsible. Additionally, through a newly-launched research project, we will critically evaluate our feedback protocols. We hope that this research will expand our understanding of how research feedback impacts participants and their families and inform ways to most effectively share test results.

The stories that we tell the world, and ourselves, carry much power. Your diagnosis story likely contains a vast range of emotions and experiences, and as the disease course continues, the story too continues to be written, to evolve, and to change. Think of ways in which your story affects you: Does it impact your well-being? Does it influence how you perceive yourself or others? Our personal stories matter, and in some cases, change us indelibly. However, they should not confine us, and they do not need to determine what is yet to come.

Indeed, there is much life to be lived and to enjoy after receiving a diagnosis, although the challenges associated with navigating this new terrain can feel daunting. One helpful way to begin is by identifying resources that will support and sustain you and those around you on this journey. The Mitten Minds Education Series and Mitten Minds Support Group (programs offered through our Wellness Initiative) provide education and emotional support to those who are newly diagnosed with mild cognitive impairment or early stage dementia. Joining a supportive community, connecting with peers, and becoming more informed can confer profound benefits. These resources can also provide a forum in which to tell your story, and with greater insight and perspective, can help you to understand your story’s significance and enable you to craft a personal narrative that is most meaningful to you. 

1. Alzheimer’s Association. In Brief for Healthcare Professionals Increasing Disclosure of Dementia Diagnosis.; 2012. http://www.alzheimer-europe.org/Research/Value-of-knowing.
2. Alzheimer’s Association. 2019 ALZHEIMER’S DISEASE FACTS AND FIGURES Includes a Special Report on Alzheimer’s Detection in the Primary Care Setting: Connecting Patients and Physicians.; 2019.

— Theresa Gierzynski, LMSW

Wellness Initiative Coordinator

New & Upcoming Program Registration

Catching Your Breath

October 10, 10 - 11:30 a.m., Virtual

Catching Your Breath is a monthly program focused on learning and practicing stress resilience skills for continued health, balance, and well-being. The program is for family caregivers of adults living with a dementia.

Mitten Minds Support Group

October 18, 3 - 4 p.m., Virtual

The Mitten Minds Support Group is a monthly support group for individuals with mild cognitive impairment or early stage dementia. The support group provides a space for individuals living with memory loss to meet and learn from others going through similar experiences.

NEW SESSION: Mitten Minds Education Series

October 19 - November 23, 10 a.m. - 12:00 p.m., Virtual

The Mitten Minds Education Series offers a series of educational presentations for individuals who are newly diagnosed with mild cognitive impairment or are in the early stages of a dementia. The goal of the series is to provide important information to individuals who have been recently diagnosed, provide a space for questions to be answered, and to connect to other resources and support services available. A loved-one may accompany you to the program.

CALM Conversations 

October 27, 1 - 2:30 p.m.

Conversation Topic: Rebuilding and creating a life when caregiving for another ends, and inner caregiving

CALM Conversations is a series of facilitated discussions exploring topics related to change and loss throughout the caregiving journey. Recognizing the presence and impact of losses while developing ways to include grieving in wellbeing practice is integral to connection, healing, and growth. The program is currently offered virtually.

Cultivating Creativity 

November 1, 10 a.m. - 12 p.m., In-person at Vibrant Life 

Cultivating Creativity is a monthly arts program for persons living with memory loss and their family caregivers. Participants will enjoy an instructed and dementia-friendly art activity together. Projects include painting, print making, ornament and coaster decoration, and cardmaking among other activities.

Research Study Recruiting Adult Children of Someone Living with Dementia

Dr. HwaJung Choi and her team are investigating how the availability and circumstances of family members influence the type and level of care over time. Her study’s focus is to learn the social, financial, and health circumstances of family members of persons with dementia and how the care availability changed due to the COVID-19 pandemic. It also aims to learn about dementia care transitions influenced by changes in family circumstances. The study team is recruiting adult children of an adult who received a dementia diagnosis at least one year ago. Participants will be asked to complete a 5-minute written questionnaire and 45-minute interview over the phone or computer. For more information, view the study flyer below or contact the study team at parkbo@umich.edu or 734-985-0526. 

Soothing Word of the Month

Guanxi (Mandarin) – Pronounced gwan-shee. Guanxi is translated as ‘connections’, ‘relationships’ or ‘networks’ and refers to having and maintaining strong personal relationships and support.

Upcoming Events 

Safety and Security Concerns for People Living with Dementia 

October 25, 10 a.m. – 12 p.m.

U-M Detroit Center, 3663 Woodward Ave, Detroit, MI

Complimentary lunch provided

Betsy Posby, D.N.P., AGPCNP-BC, Nurse Clinician at the Michigan Alzheimer's Disease Center will present. 

If you are interested in attending the event, please register with Stephanie Nava at senava@med.umich.edu or 734-615-1755.

Breaking the Dementia Stigma: Why We Wrote Finding the Right Words

Presented by Bruce Miller, M.D. and Cindy Weinstein, Ph.D.

November 22, 12 - 1 p.m.

Virtually on Zoom

Bruce Miller, M.D. is the A.W. and Mary Margaret Clausen Distinguished Professor in Neurology, Director of the Memory and Aging Center, and Co-Director of the Global Brain Health Institute at the University of California San Francisco

Cindy Weinstein, Ph.D. is the Edith and Eli Broad Professor of English at the California Institute of Technology

Registration is required at the link below.

The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It

Book Talk with Jason Karlawish, M.D.

November 28, 6 - 7:30 p.m.

Literati Book Store

124 E. Washington St., Ann Arbor, MI 48104

Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its beginnings to its recognition as a crisis. Rich in science, history, and characters, The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers’ support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.

Registration is not required.

Michigan Alzheimer's Disease Center