July 2023 Newsletter

Why Should We Care About Early Diagnosis?

I was listening to a dementia education series from the University of California, Irvine recently and it stated that people often delay speaking to their health care provider about memory changes until they are far progressed in their cognitive decline.

I began thinking about why people would delay in discussing concerns about their memory? If we had persistent headaches, if we had an irregular heartbeat, if we had worsening back pain, if we had bowel changes, wouldn’t we make an appointment to discuss it with our doctor?

Surveys show that dementia is the most feared health condition and is overtaking heart disease and cancers as a major cause of death. Fear of the diagnosis of dementia could be a reason some people procrastinate seeking medical advice, especially if the misperception is that there is no benefit to an early diagnosis – “I’m going to put my head in the sand, I don’t want to know about it!”

The FDA recently approved a new medication, Leqembi (generic Lecanemab), an every-other-week infusion treatment for early Alzheimer’s, which could potentially slow down the progression of early stage Alzheimer’s-related cognitive decline. This medication has just received approval and is not yet widely available. However, getting the correct diagnosis could put people in queue as it becomes available. How much real benefit it will offer remains to be seen in the years to come.

A potential treatment is exciting but there are other valuable reasons to receive an early and correct diagnosis:

Not all cognitive changes are due to dementia - Other conditions such as depression, medication side-effects, thyroid disorders, hearing and vision deficits and other chronic diseases can affect cognition. These can be treated if properly diagnosed. Wouldn’t you want to know if you had a condition that could be treated?

I remember several residents in assisted living who seemed confused and had the diagnosis of dementia on their medical chart. It turned out that some of them were taking multiple medications that caused confusion and sedation. When the medications were eliminated, their confusion cleared up and their dementia was cured, miraculously!

Not all dementias are Alzheimer’s - Differentiating and receiving the correct diagnosis makes a difference in prognosis and future planning.

Awareness – Putting a name to scary symptoms (even if it is an unwelcome diagnosis such as dementia) can help the person and family members better understand personality and cognitive changes and assist in maintaining important relationships.

Education – There are many different causes of dementia and there is a lot to learn about each one! A person affected by frontotemporal dementia will have very different changes than a person with vascular dementia or a person with Lewy Body dementia. Deep knowledge of the specific condition can help to establish realistic expectations.

Support – After a person receives a diagnosis of dementia, the medical team often has little to offer. The person and their family members are left to investigate resources at a time when they may be devastated and emotionally drained. Studies show that receiving emotional and psychological support after diagnosis can help in maintaining independence for longer. And participating in support groups can make a big difference in decreasing the feeling of isolation and being overwhelmed.

Planning – Working to update wills, trusts and power-of-attorney early in dementia when the person can participate can alleviate future legal complications. Also, having time to investigate local resources such as assisted living, nursing homes, day programs and home care agencies in advance of a crises can help avoid having to make last-minute decisions when assistance is needed.

There is national focus on training primary care doctors to appropriately screen for cognitive changes on all patients 65 years and older. The types of cognitive changes they are screening for include:

Age-related cognitive changes – these types of changes don’t affect normal function and the person is still able to make independent decisions. I remember playing card games with my mother when she was 90 years old. Sometimes it took her longer to play her cards, but she could still regularly beat me!

MCI (mild cognitive impairment) – this is an abnormal decline in cognition but the person may be able to use compensatory strategies and continue to live independently. Some people with MCI will go on to develop dementia.

Dementia – this level of impairment affects normal function. If diagnosed early, supportive therapies can be put in place to help maintain independence longer.

If you or someone you care about is experiencing cognitive changes, make an appointment for a screening and learn more about what could be causing your changes.

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

My book, Getting Dementia Care Right – What’s Not Working and How It Can Change will be available in August from Health Professions Press. It has a dual focus as it is written for both people living with dementia and their families as well as professionals working in elder care. After working in assisted living communities and nursing homes across the country for many years, I know there are great opportunities to create change and improve the level of support for people living with dementia. I’m grateful that the old, dark buildings of years ago are being replaced by more modern and sunlit buildings, however the template for care has not changed enough!

As professionals, we are still trained to focus on the losses and inabilities of each person, rather than their strengths and talents. Also, outdated policies and procedures result in unnecessary restrictions and locked doors.

Most people with dementia will live for several years after their diagnosis and are left without assistance to patch together a plan of care. Unlike other patients receiving a devastating terminal diagnosis, people diagnosed with dementia are seldom offered significant treatment or rehabilitation options or recommendations on how to continue to live their best life.

Likewise, the dedicated workers in assisted living and nursing homes recognize that their days are generally filled with a long list of tasks to complete. There are many challenges for senior residential care communities but I know that the staff, as well as people living with dementia and their family members, want the best.

I am often asked by people living with dementia and their family members to help them choose the best environment for care, as they don’t know how to make a selection. Every chapter in Getting Dementia Care Right includes a special section for people with dementia to help them choose the most dignified and supportive environment.

Also, recognizing that dementia care is complex, leaders as well as direct care staff often receive inadequate education about dementia. The book includes tools for assessing the strengths and challenges of your memory care program as well as tools for problem solving complex situations.

I feel that if people living with dementia and their families are well informed, they will be empowered to make more thoughtful and better decisions. And professionals need real tools to assist them in complex situations. Together, we can create change!

Getting Dementia Care Right: What's Not Working and How It Can Change: Ellett M.S.N N.P., Anne: 9781956801064: Amazon.com: Books

Getting Dementia Care Right - Health Professions Press (healthpropress.com)