I hear from caregivers pretty regularly saying: "Nobody really understands how hard caring for a loved one with dementia is!"
So, I wanted to share some facts about dementia caregivers in the hopes that it will provide some understanding and support for the dementia caregiver's journey.
So here are ...
5 Facts You Should Know About Dementia Caregiving
1. Nearly half of all caregivers provide care for someone with dementia
Nearly half (48%) of all caregivers provide care for somebody living with dementia. So of all the illnesses that older adults experience, all the illnesses that people in life experience and need care for. Nearly half of all caregivers, everywhere provide care for people living with dementia. That includes Alzheimer's disease, vascular dementia, Lewy body dementia, and so on. This says a lot about the complexity of dementia and how much care is needed, especially at the middle and later phases of the dementia illness course.
2. The majority of people living with dementia live with a family member (not in assisted living or a nursing home)
The majority of people living with dementia live with a family member, not in a nursing home. In fact, still less than 5% of older adults live in nursing homes.
Women tend to be the ones providing care. So of all dementia caregivers, two thirds (2/3), that's 67% are women and over one third (1/3) are daughters.
3. Dementia is the most expensive illness to care for
Dementia is the most expensive illness to care for because it often requires 24/7 care for potentially years. In 2018, dementia caregivers reported nearly twice the average out-of-pocket expenses than caregivers caring for other conditions. According to the Alzheimer’s Association, dementia caregivers spent on average $11,233 and other caregivers spent $6,075. This includes paying out of pocket expenses medical care, personal care, household expenses, respite care, and so on for the person living with dementia.
Bonus fact: Dementia caregivers provide care on average one to four years longer than caregivers of other conditions
Along with how expensive dementia caregiving can be, caregivers provide care on average one to four years longer than caregivers of other conditions. So not only are dementia caregivers paying annually, nearly twice as much as caregivers who are not caring for dementia, they're spending that much money for longer.
4. The majority of dementia caregivers are still working on average 35 hours a week
In fact, 60% of dementia caregivers are still working on average 35 hours a week. This is quite impressive. Not only does the dementia caregiver provide care to their loved one living with dementia often needing 24/7 care, they are doing so while maintaining nearly full-time work. I can only imagine the bind that dementia caregivers are in financially, they spend more than $11,000 a year on caregiving, no wonder they need to work.
5. Dementia caregivers have higher rates of stress, depression, anxiety, and strain
Dementia caregivers, unfortunately, have higher rates of stress, depression, anxiety, and strain than caregivers caring for other medical problems. They also have more health problems than caregivers who are caring for other medical problems. It’s no wonder: they’re spending more money, working almost full-time, and providing a high level of caregiving.
As you can see dementia caregivers need resources and encouragement to care for themselves in the long caregiving journey. So here are ...
3 Simple Strategies for Self-Care
1. Listen to other dementia caregivers’ stories
One way to take care of yourself is to listen to stories of other caregivers. Listening to others' stories will help you feel less alone, give you tips for finding practical resources, and may give you some ideas to reduce your caregiving stress.
- Life, Love, and Alzheimer's: Interview with Lauren Dykovitz
- Dementia Can Be Beautiful: Interview with MJ Grant
2. Get educated
The more educated you are about dementia, the more empowered you’ll be in your dementia caregiving journey. There is a lot of misinformation about dementia out there. But, here are some resources you can trust:
1. Read these posts on Psychology Today:
2. Listen to this podcast
3. Get support!
Having a community of support is essential in the dementia caregiver’s journey. A great place to do this is at your local Alzheimer's Association. They have loads of family support programs. You don't even have to have Alzheimer's Disease to receive services at Alzheimer's Association, other dementia disorders are supported there as well. It's a nonprofit, it's typically free. So give it a try. Find the Alzheimer's Association near you and your local chapter and, and get connected with a support group.
I hope this post helps all of the dementia caregivers out there to know that you're not alone and that there are many tools out there to help you navigate the winding roads of caregiving.
Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dementia 2019;15(3):321-87.