April 2023 Newsletter

Thank You Bruce!

We all know there are various causes of dementia, but many times, the term Alzheimer’s is still used to refer to any type of dementia. Dementia, whatever the cause, affects different aspects of cognition, but not all dementias are the same-- and not all dementia is Alzheimer’s disease.

We would not expect to use the general term cancer to describe all patients with various types of cancer. We acknowledge that a person with breast cancer is going to have very different symptoms and needs than a person living with oral cancer or bone cancer.

Recently, Bruce Willis and his family have been brave enough to openly share some of his experiences which eventually led to the diagnosis of frontotemporal dementia. Comments in the media were speculating that because he was forgetting his lines in a recent movie filming, he must have Alzheimer’s disease. Hold on there, not so fast!

Frontotemporal dementia (FTD) often appears earlier in life than some other types of dementia (Bruce is 68 years old), and has some characteristics such as language difficulties (he was initially diagnosed with aphasia), and personality changes. Memory impairment may not initially be evident, but impaired communication and judgement can be early signs of FTD.

It is valuable to get the correct diagnosis to help someone such as Bruce understand what is happening to him and for his support team to anticipate and better know how to assist him as new symptoms appear. What type of therapies will help him communicate better? What type of therapies will help him maintain his independence and dignity?

After someone receives a diagnosis of any type of dementia, professionals often rush to focus on their losses and inabilities, quickly labeling someone as “unable”. FTD has very different characteristics from other dementias. I have partnered with people living with frontotemporal dementia for writing and training projects, and their expertise and creativity have significantly contributed to the success of the projects! Let’s focus on abilities!

A friend of mind recently moved his wife, Joan, into a memory care area of a nearby assisted living. She was diagnosed with Lewy Body dementia and has several of the common traits, including hallucinating and the desire to constantly pace. The staff at the assisted living were concerned about the hallucinations, even though they were not distressing to Joan. She seemed interested in her visual hallucinations of small children in her room and the many squirrels she saw outside her window. She wasn’t upset or frightened. It was concerning that a doctor recommended trying an antipsychotic medication to decrease the hallucinations. These medications have risks of serious adverse effects on older people living with dementia and I wondered if he had taken the time to personally assess Joan or if the doctor was prescribing because he felt uneasy about her hallucinations?

The common practice of confining residents with dementia to a small, locked area of a residential care center can be tortuous for a person accustomed to leading an active life or needing to pace and move around throughout their day. What changes do we need in order to better support people living with different types of dementia?

Frontotemporal dementia, Lewy Body dementia, Alzheimer’s disease, vascular dementia, CTE-chronic traumatic encephalopathy from head trauma, are just some of the more common dementias. Let’s inform ourselves of the unique characteristics of different types of dementia in order to better support each individual.

Have a great day!

If you work in Assisted Living or Nursing Homes and want to make your dementia care program even better email or call me for a free consultation.

Anne Ellett, N.P., M.S.N.
AANC Certified Gerontological Nurse
Founder, Executive Director - Memory Care Support
www.MemoryCareSupport.com
AEllett@MemoryCareSupport.com
Ph. 949 933-6201

It has been a while since I sent out a newsletter. I have been working on finishing my book, Getting Dementia Care Right. The focus of the book is unusual because I wrote it both for people living with dementia as well as for professionals working in nursing homes and assisted living communities.

People living with dementia share that they want care communities to provide increased support for maintaining independence, dignity and meaning to their days. If people living with dementia and their support partners are more knowledgeable of their rights as well as the challenges that residential care communities face, they can be agents for change and influence the standards of care.

Professionals also acknowledge that the current model of care is outdated and they want to do better. Beautiful new buildings have been built but the culture seems to be stuck with policies and procedures that are overly restrictive and do not enhance resident well-being. Throughout the book there are tools and examples that can be used by professionals and people with dementia to overcome obstacles such as biases and misperceptions, staff limitations, organizational pressures, surplus safety concerns, and more.

I feel fortunate to have had the time to devote to this project. The book will be available this summer and I look forward to hearing your comments!

Preorder your copy today!