Incorporating the Lived Experience of Patients and Caregivers From Dementia Diagnosis Through the Caregiving Journey

Neurologists are the specialists who most commonly diagnose and manage the care of people with mild cognitive impairment (MCI), Alzheimer disease (AD), or other dementias, and who encounter caregivers of people with these conditions in health care settings. However, neurologists may lack the knowledge, training, or experience needed to provide adequate education and resources, and thus may be hindered in offering informed advice that could help individuals continue living well with cognitive impairment and ease the stress of caregiving.¹

The Alzheimer’s Association reports that only 45% of people with AD are given a diagnosis by their physician.² It may be difficult for physicians to tell individuals that they have a disease that cannot be stopped or slowed, fearing the emotional reaction such a diagnosis can cause.³ Doctors are much more likely to level with individuals who have cancer than individuals who have AD.³ Possible causes for this phenomenon have been posited to include physicians’ frustration at the lack of effective AD treatments, time constraints, and subconscious existential and emotional aspects that impact their diagnostic approaches.⁴

Burnout, which affects up to 60% of neurologists, may produce impairments in judgment, poorer care outcomes, and increased likelihood of patient objectification.⁵ Burnout also may affect the ability to follow through after delivering a feared or serious diagnosis and may inhibit the expression of empathy and compassion in clinical encounters, which many people with dementia and their caregivers have encountered and reported.¹ Poor clinical interactions may have far-reaching consequences, including undermining trust in physician–patient relationships, negatively affecting treatment plan compliance, and affecting individuals’ perceived self-worth and caregivers’ well-being.¹

First-person accounts can help inform neurologists and other health care providers of the lived experiences of people who have been diagnosed with MCI, AD, or other causes of dementia as well as the experiences of their caregivers and should be made available to those in practice and those in training.

Dr. Marie Marley, who has a PhD in Musicology, changed her professional focus after retiring and became a noted author and speaker about caregiving for people with AD. She was diagnosed with breast cancer in 2010 and with MCI and AD in 2012, although eventually it was determined that her cognitive dysfunction had been attributable to a treatable medical condition rather than a neurodegenerative disorder.

Daniel C. Potts, MD, FAAN, had the opportunity to speak with Marie Marley, PhD, an author and speaker on caregiving for people with Alzheimer disease, about her experience being diagnosed with mild cognitive impairment and Alzheimer disease and how that experience contrasted with being diagnosed with breast cancer. Their conversation forms the basis for this article. They also discussed Dr. Marley’s experiences as a caregiver and provide helpful recommendations and resources designed to assist caregivers and physicians in their caregiving journey (see Figure).

Evaluation and Diagnosis

What led you to seek a cognitive evaluation?

I was having significant problems with memory, cognition, and therefore, my ability to do my demanding job as a grant writer. For example, sometimes I would get completely confused when I had to do something as simple as cut and paste a few sentences or paragraphs, and I had to ask my assistant to come over and do it for me. I was constantly losing documents and forgetting important tasks I had to do, even though I kept a list. I frequently left my glasses or my laptop, which I needed at home, at work when I left in the evening. Most of my friends tried to convince me that nothing was wrong. They said I was just tired or stressed out, but I knew better.

What was your point of entry into the health care system with this concern?

First, I went to my family doctor. I might add that I got lost on the way there, even though I’d been driving there for years. When I finally arrived, I gave the doctor a typed list of examples of my problems. She suggested that I go to a neuropsychologist for testing. There was no instruction to follow-up with her.

What happened when you saw the neuropsychologist?

After 4 hours of testing conducted by his assistant, I returned for a meeting with the neuropsychologist. He told me rather matter-of-factly that I had “symptoms consistent with dementia of the Alzheimer type.” I was, of course, devastated, but he didn’t seem to notice.

Then he gave me a sketchy 2-page handout on compensating for memory problems. It was very incomplete and, in fact, as a blogger on the Huffington Post, I had already published a post on that very topic which was more detailed and comprehensive. So the handout was of little value to me.

He did not advise me to see a neurologist, he did not refer me to the Alzheimer’s Association or any other community resources, he did not offer me any other educational materials, and he did not tell me to return at any time for follow-up.

I subsequently went to see a neurologist on my own initiative.

Tell me about your experience with the neurologist. What type of assessment was done?

He ordered a large battery of tests, including, among others, cognitive testing, bloodwork, and a sleep study. He even ordered a test for syphilis, which I found rather amusing.

What is your impression of the way diagnostic news was delivered? What was the setting and who was present?

The cognitive test—the Montreal Cognitive Assessment—was done in his office at my first visit, where I went with a friend. He told me in a rather bland manner that I had MCI and that he was going to order several tests.

When I returned to get the test results, he told me I had sleep apnea and that could be the cause of some of my symptoms. He also said my stressful job could be a contributing factor. (I subsequently got treatment for the sleep apnea and retired—at age 63—from my job.)

How were you affected and what were your greatest concerns, challenges, and fears at that time?

Although the diagnosis was upsetting, it was a little less distressing than the AD diagnosis I had received from the neuropsychologist. Nonetheless, I was terrified that the MCI would progress to AD. The neurologist did not tell me the likelihood that it would or would not.

Were you treated with compassion and empathy?

As I mentioned, the diagnosis was delivered in a bland way, and he expressed no empathy. He just told me what I had and sent me home.

What educational resources, referrals, partnerships, and follow-up were arranged?

He didn’t refer me to the Alzheimer’s Association or any other community resources, he didn’t offer me, or even recommend, any educational materials, and he didn’t tell me to return for follow-up.

Were you enabled, to the extent possible, to live well with your new diagnosis?

No. I had to deal with it on my own. I did, however, eventually find support from 3 sources that I arranged on my own. I began seeing a psychotherapist, which was very helpful. I also contacted my local Alzheimer’s Association chapter, which had a wealth of educational materials for people diagnosed with cognitive impairment, and I studied the informative and helpful website of the national Alzheimer’s Association.

How would you characterize subsequent interactions?

There were no subsequent interactions.

Did you arrange any follow-up yourself with either the neuropsychologist or the neurologist?

Yes. I arranged to see the neuropsychologist, but during the 1 year before seeing the neuropsychologist, I was convinced I had AD and had to live with that somber knowledge every day. I requested to have the testing repeated. I did a little better that time and he changed the diagnosis to MCI. I also arranged to have the testing repeated again after another year. That time I aced it, and he told me I didn’t have AD or MCI. He said my recovery was probably due to the sleep apnea treatment and also from having retired.

I did not arrange any follow-up with the neurologist. There didn’t seem to be any reason to since I had allegedly been cured. I’m so glad I decided to see a neurologist, even though no medical professional I’d seen had recommended it. Had I not gone, I’d probably still be having dementia symptoms, which would be completely destroying my quality of life.

Please compare and contrast how this experience—being diagnosed with AD and MCI—differs from your experience when you were diagnosed with breast cancer. What were the main similarities?

The main similarity was the uncaring way in which the traumatic diagnoses were delivered. The family doctor I saw for the breast cancer concerns called me on the phone and in a 1-minute conversation told me I had breast cancer and told me to see a surgeon. That was it.

What were the main differences?

Once I entered the oncology medical setting, the differences were striking. I was treated with empathy by the oncologist, the radiation oncologist, and the breast cancer surgeon.

I was also offered several educational materials, consisting of 2 books, a large ring binder full of information about breast cancer, and several informational brochures. In addition, there was an oncology nurse who provided education about chemotherapy.

There were also several support services offered. These included a nurse navigator, a breast cancer support group, and a peer support program.

Are there aspects of your oncology/breast cancer experience that neurologists, and others in health care who diagnose, treat, and support people with cognitive impairment, would do well to learn?

Unlike the breast cancer physicians, it didn’t seem that either the neuropsychologist or the neurologist understood the tremendous impact their traumatic diagnoses would have on me. More empathy would have made the situation a little less upsetting. Furthermore, it would have been helpful to receive educational materials on the spot. Most of all, it would have helped to be referred to the Alzheimer’s Association or other resources for further education and support.

Caregiver Essentials

I understand that you were a caregiver for a loved one who had AD. Please share a bit about the quality of your interactions with and the support you received from medical professionals, particularly neurologists, related to the care of your loved one.

When it became clear that Ed Theodoru, my partner of 30 years, was developing dementia, I made an appointment with a neurologist, but Ed refused to go. I made an appointment with his internist, whom he liked very much. I was sure he would go, but he wouldn’t. So I went to the appointment by myself and gave the doctor my written documentation of Ed’s various memory and cognition problems. The doctor diagnosed Ed with dementia. Then I left, clutching the paper I needed to legally handle Ed’s affairs. Neither I nor Ed ever saw that doctor again. No education, support, or follow-up were provided.

I was extremely stressed trying to take care of Ed, and eventually I convinced him to move to a memory care facility. I received no support from the medical community there and, later, just a little bit of support from Ed’s hospice team. The facility sponsored a support group, but it met in the evenings, and I couldn’t drive after dark, so I didn’t attend. I did, however, receive solid support from 2 sources: a private psychotherapist and a dementia caregiver coach (a master’s-level social worker) from the local Alzheimer’s Association chapter. We emailed every single day; I don’t know how I would have survived without her.

What was most helpful during your caregiving journey?

Nothing from the medical community and little from the hospice organization or the facility where Ed lived was really helpful. The only things that helped me were the psychotherapist and the Alzheimer’s Association caregiver coaching program. Both of those, which I arranged entirely on my own, were immensely helpful.

What was lacking in your caregiving journey?

Education, support, follow-up, and referral to the Alzheimer’s Association and other community resources were lacking.

What is your advice for caregivers of individuals with cognitive dysfunction? What are the most important things caregivers should know?

Caregivers can strive to learn as much as possible about cognitive impairment and read some books about caring for a person with such a problem. They may also want to explore the resources for individuals and caregivers offered by the Alzheimer’s Foundation of America and the Alzheimer’s Association. Both the Foundation and the Association have free helplines caregivers can call for advice and support. Also, they can find out about the resources of their local Alzheimer’s Association chapter.

What are some of the most important things caregivers should do when providing care to their loved one?

First, be sure to take the person to see a neurologist—not a family doctor, internist, or neuropsychologist. Next, if the loved one is in the early stages of impairment, look for a support group for people with early-stage cognitive dysfunction. Some local chapters of the Alzheimer’s Association offer these. Also, see if there are any memory cafés in your area. These offer an excellent opportunity for socialization and entertainment with others who have similar difficulties.

What about taking care of themselves? What can caregivers do in that respect?

There are many things I wish I had known about when I was a caregiver. Caregivers can consider attending a support group themselves. Also, they must take good care of themselves, both physically and emotionally. If they aren’t healthy, they can’t be a good caregiver. They should make time for themselves and keep all of their medical appointments. It’s also important to spend time on a favorite hobby or pastime. And if the stress of caregiving, which can be very stressful, is getting to be too much, caregivers can think about seeing a psychotherapist for professional support.

Perhaps the single most important thing is to ask for help. Caregivers are usually reluctant to ask for help because they feel like they should be able to do it all themselves and because they don’t want to impose upon others. However, most friends, neighbors, and family members want to help—they just don’t know what to do. The caregiver can help them by asking specific people to help with specific tasks. Tasks can be as simple as asking someone to stay with the individual with cognitive impairment on one afternoon a week, so the caregiver can have time for a hobby, attend a support group, or just have some alone time. Another person could be asked to prepare one meal per week. The caregiver can spread duties around among several people so no one person becomes burdened.

Some people with cognitive impairment become difficult to deal with. Do you have any advice for how the caregiver can handle this situation?

I have 3 pieces of advice. First, don’t argue with the person. You can’t win, and usually it doesn’t matter who’s right and who’s wrong. Just agree with them unless there’s a compelling reason not to, and there rarely is. Second, don’t even bring up topics that could lead to an argument. Finally, if the person does become agitated, try quickly changing the subject to distract them from their anger. These approaches usually work well at reducing the number and intensity of disagreements.

Sometimes people in the latest stages of cognitive dysfunction are difficult to reach. Do you have any suggestions for getting through to them?

There are several things that can be tried. They are all helpful for any stage of impairment, but are especially helpful for people in the latest stages.

Music, art, pets, stuffed animals, children, dolls, and touch can help. Individuals with late-stage disease will often respond to one or more of these, even if they don’t respond to anything else. As a volunteer, I’ve been visiting people with AD for several years, and have only seen 3 individuals with extremely advanced-stage disease who wouldn’t respond to any of these.

You are a respected author in the dementia caregiving space. Please share any information you would like about your authored resources.

In addition to my 450 blog posts about AD caregiving—many on the Huffington Post—I wrote an award-winning memoir, which narrates my 30-year relationship with my partner, Ed Theodoru—Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy⁶—focused on the time when Ed had dementia. I originally wrote it as a love story, but when the Amazon reviews started coming in, many dementia caregivers said it helped them very much. Furthermore, many former caregivers said they wished they had had it when they were caregivers. So, I like to say I accidentally wrote a book for AD caregivers.

I am also the co-author [editor’s note: along with the interviewer, Dr. Potts] of Finding Joy in Alzheimer’s: New Hope for Caregivers.⁷ Our book’s main premise is that if you can accept your loved one’s condition, you will open yourself to experiencing joy. Some of the Amazon reviewers have recommended that the book be given to all memory care facility staff members; others have stated that it should be read by all dementia caregivers.

Conclusion

Dr. Marley’s experience, which highlights improvements needed in the approach to diagnosis and support of people with dementia and their care partners, should serve as a call to neurologists to foster a culture of compassion in dementia care. This includes making a timely and accurate diagnosis and delivering health news with compassion and empathy, providing education and resources for support, mentioning opportunities to participate in research, scheduling follow-up care, attempting to understand the experiences of caregivers, and guiding individuals and caregivers toward helpful resources and support services, as needed. Neurologists should advocate for change through organizations in which they are involved, including government agencies that are responsible for making policy and generating funding for dementia care, education, and support.