Typically, when we hear the words ‘Alzheimer’s Disease’ or ‘Dementia,’ we picture a much older individual – often someone well into retirement. However, as I am learning, this picture is changing, and it seems to be happening at a fairly rapid rate.
I had an opportunity to speak with a former caregiver this past week. She cared for her mother who had been diagnosed with Alzheimer’s at age 55. Because of her age, her mother was diagnosed with early-onset Alzheimer’s and dementia. (Remember, the definition of “early onset” Alzheimer’s or dementia is someone diagnosed under the age 65.)
Her mother was working as a nurse in another state when she noticed she was having difficulty with her memory. Because she was a nurse and aware of these changes, she decided to get tested. She was diagnosed with Alzheimer’s Disease.
THINK ABOUT THIS FOR A MINUTE…
Here is a woman in her “prime” years, in a job she loves, with family spread out around the country, and she has just been told that her cognitive ability is declining and will continue to decline.
As a result of the diagnosis, she had to quit her job. She could no longer drive. As the disease progressed, she had to move to another state to live with her daughter.
THINK ABOUT THIS FOR A MINUTE….
This woman was already stressed knowing and understanding her situation. Now, she has to give up her job, her home and her independence (no driving). And remember, this was when she was 55 years old.
What about her daughter, the caregiver? Her mother communicated with her during the outset, so she was aware of the changes occurring. She too had a basic understanding of what was ahead. So she did what many of us would/will do, she had her mom move in with her. This meant she was a bona fide caregiver.
The unique difference between her and most other caregivers is she was very young. (‘Mom’ the patient is young, so ‘daughter’ the caregiver is young.) So in this real-life scenario, the patient is in her late 50s and the caregiver is in her 30s.
This situation is being played-out over and over again across our country. The needs of the patient and caregiver with early onset are very different than the needs of those in their 80s.
Both patient and caregiver are likely working and have family obligations. (So when caregiver is working, who is watching patient?) The caregiver has young kids, so now three generations are involved. The caregiver has to manage two generations while continuing to be a full-time parent and probably working. All are ill prepared for this diagnosis, and most will go through a denial stage for a period of time. (Grandkids wonder why grandma is now living with them and acting differently than before.)
There is limited support for early onset. The current support system for Alzheimer’s patients and caregivers is targeted to elderly people – support groups during the day (not good for person in our example because of work), adult day centers where the average age of patient may be above 80 (most 55-year olds would not want to be in a day center with 80 year-olds), insurance challenges (55 year olds are not eligible for Medicare, and since they can’t work any longer, they don’t have any insurance), etc.
These challenges will not go away soon, and in fact, if trends continue, this will be an increasing problem for many of us. At TPF, we wonder what tools and resources are available or might be developed to address this situation?
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