Diane Ty is the Senior Director of the Milken Institute Center for the Future of Aging. She is an author of a report called Guiding the Care Journey Building Dementia Workforce and System Capacity Through Care Navigation. It takes a deep dive into explaining why care navigation is an important element in the complex care journey to help people living with dementia and their family caregivers.
I interviewed Diane to learn more about how this affects caregivers for Alzheimer’s and related dementia patients.
Most women over 50 have experienced being a caregiver in some capacity or will likely become one in the future. Many have taken care of children but caring for an aging parent or loved one with these disorders is even more difficult because it is a progressive degeneration.
There is a book called The 36th Hour Day that has been in multiple prints throughout the years and there is good reason for that. Caring for a dementia patient significantly impacts a caregiver’s personal health and financial/economic situation. It can often disrupt their career as well.
How female caregivers are impacted
The average female caregiver is in her late 40s which is when she is at the peak of her earning potential. She may be forced to reduce her work hours and huge demands are put on her time. Some of these women are members of the sandwich generation and may be taking care of their children as well as their aging parents.
According to AARP, over 60 percent of family caregivers also work, and an estimated 7 in 10 working caregivers reported having to leave work early, calling out from work, avoiding additional work responsibilities, or declining promotions because of caregiving responsibilities.
A dementia caregiver must navigate not only the health care of the patient but also the social care system. These services include transportation, caregiver education, and support. Having a single point of contact could allow caregivers to navigate between the two more easily. It is a disjointed process but is essential.
The average time dementia caregivers care for their loved ones is 5-7 years but it can go on as long as 20 years. No two cases of Alzheimer’s or related dementia are the same.
Diane’s experience with Alzheimer’s Disease
Diane lost her father to Alzheimer’s 10 years ago and had three kids to care for at the time. She was working at AARP which was incredibly supportive, but it was still difficult for her. She tells people that caregiving feels like a journey of one that we’re navigating alone.
There can also be cultural responsibilities for women that come into play. A woman may feel that her parent sacrificed so much for her and she must sacrifice for them. It gets complicated when she must deal with kids and a spouse as well.
Diane eventually left AARP to get a handle on her life but was lucky to pick up some consulting work soon afterward.
How to improve the workforce of health professionals that deal with dementia
Doctors that a caregiver deals with may not have the expertise or confidence in dementia care to properly help. This is also true of the public at large. Most people don’t know the difference between normal aging and what signs of cognitive impairment they should be concerned about.
The report recommends enhanced training for healthcare professionals, including geriatric care, to help educate them to diagnose and treat patients with cognitive impairment more accurately. Currently, many providers only receive roughly one hour of dementia care training.
Diane says that an estimated 60-80% of people with dementia are not diagnosed, which has widespread implications.
For example, a patient may need to take medications but does not because he or she can’t remember what they are supposed to take and when.
There must be a focus on early detection and diagnosis for the trained workforce. A previous Milken Institute report, Building Workforce Capacity to Improve Detection and Diagnosis of Dementia, details opportunities to do this for direct care workers, family caregivers, nurses, social workers, physician associates (PAs), geriatricians, and other healthcare workers. There is presently a shortage of dementia-capable healthcare workers.
Why is dementia care a women’s issue?
Over 60% of dementia caregivers are women. Additionally, two-thirds of the people with dementia are women and disproportionately women of color.
We need to raise awareness of what women can do to prevent the onset of these brain disorders starting with taking care of themselves.
Modifiable risk factors to prevent Alzheimer’s disease and related dementia
- Not getting enough sleep. This is a significant risk factor and is super important.
- Smoking.
- Hypertension
- Type 2 diabetes
- Obesity
- Air pollution
- Depression
- Lower education
- Not enough exercise
- Poor nutrition
- Excessive alcohol
- Hearing loss
As women, we need to take charge of the things we can do to stay strong and healthy and to modify our risk.
The financial impact of caregiving
Medicare does not pay for nursing care so it is important to have a long-term care insurance policy if possible.
Caregivers often spend their resources to help qualify their loved one for Medicaid as it does cover nursing homes. However, the process of qualifying isn’t simple and there are complicated rules that must be followed.
The importance of instituting a Care Navigation Single Point of Contact
Caregivers in all capacities often find it difficult to deal with doctors who are not in the same system and who do not always communicate with each other. I found this to be true while caregiving for both my husband and later a boyfriend who both died of cancer. Embedding a care navigation single point of contact aspect into the healthcare system would help coordinate both medical and social system contacts for the caregiver.
How do patients deal with not having a loved one to care for them
There is a term called solo agers who are patients who do not have children or loved ones available for support. This can be particularly difficult when they are diagnosed with Alzheimer’s or dementia. More people have chosen to remain single, do not have children, or are estranged from them so caregiving for them when they become ill is a big concern.
How to improve caregiving in the Healthcare system
The Care Navigation Report’s mission is to bring awareness of what the healthcare system is lacking in terms of what it provides for Alzheimer’s and related dementia patients. It recommends embedding a framework of care navigation into dementia care teams.
Another concern that the report addresses is the need to create the best payment mechanism to incentivize the adoption of care navigation. Most care navigation services are not covered by traditional or fee-for-service Medicare. Some Medicare Advantage programs do cover them, but uptake is not yet widespread.
In summary
The healthcare system is lacking in services to provide the best care for patients, particularly those with Alzheimer’s disease and related dementia. Women are particularly impacted both as caregivers and as potential patients themselves and must take care of themselves. Support and education are needed to provide help for both caregivers and healthcare professionals to make the system more efficient.
Have you been a caregiver for a dementia patient? Please leave a comment below.
More and easier-to-access help needs to be given. I lived in a very liberal state when caring for my elderly mother, and I still had to jump through hoops to get assistance. I was still jumping through those hoops when she passed.
I hear you Jennifer. It was hard enough dealing with a cancer patient but dementia can be even more challenging.
My Dad had Alzheimer’s, and my Mom had to deal with him and the healthcare system. She had some difficult years. I don’t know the answer, but as a country we should be able to do better for both the caregivers and the sick person.
I agree Meryl. It’s such a difficult job and can last years. I hope the situation gets better for all involved.
For sure something badly needed. Especially as our huge generation is aging.
That is so true, Carol.