Tag Archives: dementia

A Tale of Two Pills

People seem to have tremendous faith in pills. Pharmaceuticals help us manage many diseases, so maybe this fervent belief has some grounds. But dementia is a disease that is very resistant to intervention. Our family has experimented with two different FDA approved drugs in an effort to improve my mom’s quality of life. One had a minimal, positive effect. The other was disastrous in every way and made us change our approach to care.

Months before my mom had a real diagnosis, her family practitioner prescribed Aricept to treat her memory loss symptoms. It was not a terrible move. But it bothered us that no real study had been conducted to identify the roots of her illness. There was no PET scan, no MRI.

When Mom told us that she was taking this drug, we asked her what diagnosis she’d been given. She answered that there was no diagnosis, just memory loss. Then she laughed when she told me the drug was waking up her ovaries instead of her brain. A few months on this medicine brought modest improvement in mental function, but had zero effect on the progress of the disease.

After changing doctors, we pursued a twisting path of investigation and dashed hopes. Eventually, my mother got a more precise diagnosis of her problem. She had a rare form of dementia that is not known to respond to any course of treatment. To address her symptoms, she began taking Namenda, another Alzheimer’s drug that we were told would have a mild effect on her cognitive function.

A few weeks into the treatment, she began to have episodes of wild behavior. Mild mannered Mom was throwing her clothes around her room and hiding underwear beneath the bathroom sink. One day she removed the contents of her closet and hurled everything on the bed: dresses, blankets and tax receipts all over the room. Days later, I came home from the auto shop to find she’d shredded a pair of pants with a steak knife.

The most terrifying aspect of this incident was that I thought the disease was driving her behavior. We had one of the saddest conversations imaginable when I told her I’d have to call the doctor and he might make me put her in the hospital. She said was ready to go — not just to the hospital, she was ready to depart this earth! Together we cried a river.

Fortunately, my sister discovered that Mom’s strange behavior was a rare, but documented side effect of Namenda. If there is a moral to this story, it is that different people have different reactions to the currently available drugs. My mom is tiny and has always had difficulty adapting to normal dosage guidelines. In this case, the consequences of that tendency were horrific.

This story is here to serve as a cautionary tale. If you’ve have had better experiences with medications, I would love to hear about them. Feel free to share any good news with other readers of this page. We all need to learn as much as we can.

Together We Might Advance — How Caregivers Can Help with Dementia Research

It’s tough to think ahead when you are in the middle of a caregiver crisis. We constantly respond to the needs of our loved ones, yet seldom have time to learn better ways of solving problems. Today, however, there are pioneering research studies underway to help caregivers find new techniques for managing stress and reacting to common dementia care problems. To learn more about one study, I interviewed Jennifer Merrilees, RN, Ph.D., who is part of an international team now working with caregivers in the United States and Australia.

The U.S. section of the research group works out of the Memory and Aging Center of the University of California, San Francisco. But because the work is done over the Internet, caregivers from any part of the country can participate in their study.  Sessions are carried out using online technology that is adaptable to any computer with a webcam. The only restriction for participants is that the dementia patient they care for must have a confirmed diagnosis of Frontal Temporal Degeneration (FTD). This includes people diagnosed with Corticobasal Syndrome, Pick’s Disease, and other variants of FTD. Click here to learn more about definitions of FTD.

This study is unique because it helps the caregiver learn to focus on skills that may help them reduce stress and find new meaning in their role. Facilitators from the study help caregivers identify — and focus on — small things that are valued and helpful in the course of a given day. The general theory underlying the study is that if caregivers focus on specific skills, it could help them cope better. The strategies employed in this study have already been used successfully by Judith Moskowitz in her work with people who have HIV. By offering new tools for managing problems, researchers hope to help reduce stresses that might affect caregivers of different ages and backgrounds.

After an interview with Judy Mastick, the project’s research coordinator, participating caregivers are assigned to one of two groups. One group is interviewed and receives support around life events, while the other gets instruction on the “skill-building” approach. Caregivers engage in one hour online sessions every week for five weeks. Sessions cover a different set of issues and techniques which caregivers can practice between meetings. The U.S. team is seeking 20 caregivers from across the country and would love to get a diverse group of caregivers of all ages.

Jennifer and Judy have extensive clinical experience in the dementia field. Jennifer earned her Ph.D. last year and has spent a dozen years providing dementia care. She also has a faculty position educating nursing students for the field. Judy is a Family Nurse Practitioner and has been involved in research studies for over 15 years. Both of them really understand the impact of dementia on patients and families. The Memory and Aging Center — where the study operates — is a national leader in training doctors, nurses, and pharmacists for positions in the dementia field. You can learn more about research at Memory and Aging Center by viewing their YouTube links.

If you’d like to participate in the study, do what I did: send an email to judy.mastick@nursing.ucsf.edu. I did it because I want to learn better ways to take care of my mom — and myself.  I also hope that my experience will benefit other caregivers who share my challenges today …or will face them in the future.