Lisa Snyder has been a social worker at the Alzheimer’s Disease Research Center at the University of California, San Diego for over fourteen years, and is the author of the book Speaking Our Minds – Personal Reflections from Individuals with Alzheimer’s, as well as the newsletter Perspectives: A Newsletter for Individuals with Alzheimer’s. In this exclusive interview with AlzheimerSupport.com, Lisa discusses the direct experiences and challenges of caregiving for an AD patient, and shares her years of insight.
AlzheimerSupport.com: Please tell us about yourself – what is your background and training.
Snyder: I received my undergraduate degree in fine art from Humboldt University in Northern California, but soon realized that I was much more interested in making conversation with people than I was in making art. I went back to school at San Diego State University in Southern California and received a masters degree in Social Work with an emphasis in medical social work. My mother is an artist, my father is a counselor, and my sister is a nurse. So I guess I’m a mix of all three!
AlzheimerSupport.com: How did you get into Alzheimer’s research?
Snyder: During my graduate work, I did an internship in the University of California, San Diego’s Alzheimer’s Disease Research Center (UCSD ADRC) and immediately felt an affinity for the work. I had lived in San Diego with my grandmother for a few years and she had an undiagnosed dementia that in retrospect was probably Alzheimer’s disease. She had all the symptoms and although it was difficult at times for both of us, we were very fond of each other and got along well. In 1987, after graduating with my Master’s degree in Social Work, I was hired on at the UCSD ADRC and have never left!
AlzheimerSupport.com: What specific research are you involved in with Alzheimer’s?
Snyder: Although most of my work at our center is in counseling persons with Alzheimer’s and their families, I have also been involved in research.
For the past eight years, I have focused on the early-moderate stages of Alzheimer’s. I have developed support groups for persons with the disease and am researching the benefits of group experiences for those diagnosed. I also continue to meet persons with Alzheimer’s in their homes for one on one interviews to better understand how they experience the symptoms and progression of the disease.
I have been doing much more writing, public speaking, and education about themes that arise in these testimonies and I find that families and professionals are very interested in this information. If we can gain insight into the often private world of persons with Alzheimer’s, we can all have greater empathy for their experiences and provide more effective care.
AlzheimerSupport.com: Tell us about your book. Why did you want to write it? What was the focus?
Snyder: Caregivers often ask, “I wonder what my loved one is thinking and experiencing? What is it like to have this disease?” In “Speaking Our Minds – Personal Reflections from Individuals with Alzheimer’s” (W.H. Freeman, publishers), seven individuals with Alzheimer’s (ages 35-80) answer these questions. They invite us to learn about the symptoms of Alzheimer’s directly from their personal descriptions. During my interviews with those profiled in the book, we discuss how they experience memory and language losses, the effects of the disease on their social and family relationships, the challenges and rewards of daily living, spiritual perspectives, and their hopes and fears for the future.
Many people think that people with Alzheimer’s have no awareness of their disease, but this isn’t necessarily so. Some do deny problems or have very limited insight, and this is particularly difficult for caregivers. But others are aware of the changes they are experiencing and can help us understand what a loved one may be going through.
Some of the symptoms and issues they discuss relate to the earlier stages (developing forgetfulness, receiving the diagnosis and the decisions around telling others the news, giving up driving etc.) Other discussions cover more severe symptoms of the disease (not remembering a son’s face, not being able to bathe or get dressed, getting lost, losing the ability to speak or write, recognizing the caregiver’s burden).
AlzheimerSupport.com: What do you think was the significance or impact of the book?
Snyder: Although we have a wealth of valuable scientific, professional, and caregiving literature about Alzheimer’s, we have so little that tells about these direct experiences so it’s a remarkable and rarely heard perspective.
Since the book came out, I have been heartened to hear from many caregivers and professionals that it opened their eyes to a deeper understanding of the world of the people in their care. I have also heard from a few newly diagnosed persons who were so grateful to read about people like them and to learn that they were not alone. I think the book is helping to create bridges of communication between those affected and those providing care. It is the legacy of these seven people to us, and they were very proud to be a part of the project.
AlzheimerSupport.com: In your opinion, what are the main issues facing AD caregivers.
Snyder: The most common issues I see in my work with caregivers are experiences of frustration and fatigue. Frustration stems from their loved one’s very challenging symptoms of the disease – the repetitive questioning, the power struggles, the suspiciousness, and the limited insight some people with Alzheimer’s have into their own condition.
Underneath the caregiver’s frustration and anger is also a lot of grief. There are so many losses. It is a very sad disease and caregivers are so busy trying to get through the day they often don’t have a chance to acknowledge these losses. The fatigue caregivers experience comes from significant changes in roles and responsibilities; they have to do more as the person with the disease can do less and less. Caregivers need time out and I work hard with them to try and help this happen.
AlzheimerSupport.com: In what ways do you help caregivers take ‘time out’?
Snyder: Sometimes, we work with community agencies to find a volunteer or a hired helper to come in and stay with the person with AD while the caregiver goes out. Or, we work to find the right match of community programming through one of the adult day cares or Alzheimer’s social programs in our region. We are a resource rich area in San Diego, and more fortunate than others in that way. But, in smaller communities, sometimes we can collaborate with churches or senior centers, or family members to create some kind of time out. Also, sometimes it is a matter of finding things that will occupy the person with AD in the home so that the caregiver can just have some quiet time at home. We try to create meaningful activities that will hold the person’s attention, but this can be a challenge.
AlzheimerSupport.com: What are some of the daily problems for AD caregivers?
Snyder: For people with the disease, they also face the day-to-day confrontations with disease symptoms, but their responses to them vary considerably and are often kept somewhat silent. Some people with Alzheimer’s talk of their loneliness – not because there aren’t others around them, but because Alzheimer’s can be such an isolating experience. The disease creates barriers between the person and their family, friends, and larger community. People with the disease tell me how hard it is for others to know what they are going through. Often their own ability to understand their symptoms fluctuates from denial and defensiveness to acute awareness and depression.
Patients sometimes talk with me differently than they do to their family. They may be afraid of burdening their family or they fear that if they admit their problems, caregivers will take away more of their independence. Caregivers often get a lot of the patient’s own anger and fear thrown at them, but they don’t hear how much the person with Alzheimer’s values and appreciates them. I try to help people with Alzheimer’s and their family members communicate the positives and negatives more effectively with one another (when possible) and this can ease everyone’s burden.
AlzheimerSupport.com: Do you perceive any shifts happening in the way AD is perceived in the population at large?
Snyder: In the last decade, we have become much better at diagnosing Alzheimer’s and there has been a great deal more attention given to the disease. I think, in general, the public is more aware of the disease and better educated about it.
Alzheimer’s has personally touched many people and slowly we’re lifting the shroud of secrecy and stigma that has historically surrounded the disease. Many people are living longer and the baby boomers are reaching retirement years. We now know that Alzheimer’s disease is not a normal part of aging, so I think as a society and medical community, we are less passive about it. There is tremendous motivation to get more funding, better treatments and ultimately prevention or cure for this disease, and that’s encouraging!
AlzheimerSupport.com: In an ideal world, what changes would you make in
society/government/medical profession to promote greater awareness of Alzheimer’s disease and the all the issue surrounding it.
I’ll start with the medical profession. We still see too many physicians dismiss memory loss to “old age” or “dementia.” Significant memory loss is not a normal part of aging and “dementia” is not an adequate diagnosis. Doctors may assume it is Alzheimer’s, but don’t always want to tell the family (or the patient) for fear of distressing them. Our HMO system can be very reluctant to pay for the thorough workup necessary to determine a diagnosis of Alzheimer’s and often families have to press to get an evaluation. Most of our treatments and upcoming drug trials are geared either to prevention or to early stage Alzheimer’s. The sooner the disease is diagnosed the better, and doctors do not do anyone a service downplaying symptoms, skirting around the issues, or postponing an honest and accurate diagnosis.
Our government needs to increase funding for Alzheimer’s research. It is still a very underfunded disease compared to other serious illnesses such as Cancer or AIDS. We need to look at the impact of long term care costs on families and society at large and recognize that with the population growing older, we are going to be facing some enormous costs ahead if we aren’t more proactive in developing prevention or a cure for this disease.
As a society, we are working to better embrace citizens of all different abilities and disabilities. We need more programs that better integrate people with Alzheimer’s into our communities. Intergenerational day care models have been wonderful and give those diagnosed a meaningful sense of purpose and value in interacting with pre-schoolers. Some programs take people with Alzheimer’s on field trips to parks, museums, or public places where they can have a safe and structured experience, but still feel like part of the community. The needs for companionship, for a feeling of purpose and value, and for basic security are not just needs of people with Alzheimer’s; we all have these needs. We must find our common ground and participate in creating the climate of caring that we hope would be there for us, too.
To order a copy of the book Speaking Our Minds-Personal reflections from Individuals with Alzheimer’s(W.H. Freeman publishers) please check with your local bookstore. To order the newsletter Perspectives: A Newsletter for Individuals with Alzheimer’s, you can contact Lisa at:
UCSD Alzheimer’s Disease Research Center
9500 Gilman Drive – 0948
La Jolla, CA 92093