Dementia is defined by the World Health Organization as “a term for several diseases that affect memory, thinking, and the ability to perform daily activities.”
It is a syndrome that can be the effect of any number of diseases which, over time, “destroy nerve cells and damage the brain, typically leading to deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from the usual consequences of biological aging.”
Unfortunately, the impairment in cognitive function is usually accompanied by behavioral changes. Thus, the care of a dementia patient tends to be very challenging.
Key Takeaways
Dementia care can be extremely challenging and costly, requiring significant sacrifice and dedication from caregivers.
- Caregivers like Veronica Shanklin face high financial costs, including $4,000 to $5,000 per month for memory care facilities and $25 per hour for personal care assistance.
- Long-term care insurance can help alleviate some of the burden by covering non-medical home care or placement in a memory care facility.
- Organizations like Dementia Care Warriors provide support systems for caregivers, including guidance, social support, and access to free senior companions.
A true story
At the age of forty-five, Veronica Shanklin decided to leave her job in marketing to devote herself to caring for her grandmother who was struggling with Alzheimer’s disease.
The decision to make the change started with her mom’s unexpected phone call about her 82-year-old grandmother being extremely aggressive and becoming frequently violent towards her working mother.
After careful consideration of all relevant factors, her own career plans and preparations had to be brought to a screeching halt.
Shanklin left her job in Chicago and flew home to Dallas for a family health issue that initially affected her grandmother.
The initial stages
When her grandmother, fondly referred to as “Mama Nell”, was diagnosed with Alzheimer’s disease years earlier, she lived with Shanklin’s mom.
Shanklin’s mother was 66 years old at the time and was still working. When Mama Nell’s behavior took a turn for the worse, Shanklin had to come down and help her mother.
I’m going to go home for a while, help my mom take care of my grandmother, and then go back to my life
Veronica Shanklin
In Dallas, Shanklin was forced to navigate a new and unfamiliar world of eldercare despite having no prior experience; and with only a day to decide, a social worker instructed the family to pick a nursing home for their elderly relative.
Shanklin found a nursing facility for her grandmother after asking advice from former school friends.
At first, Shanklin thought of her job hiatus to be only a brief detour. But when her mother was formally diagnosed with dementia later that same year, she knew that wasn’t going to be the case.
The extension
Shanklin’s mother had a history of neglecting to settle her utility accounts, leading to threats of disconnection.
She started repeating herself and having more issues with financial management; eventually mirroring the same patterns as Mama Nell.
Now that the weather is getting colder, we love the idea of finding activities to do at home.
Something as simple as looking at old photo albums and listening to music can be a great way to prompt conversation and happy memories. pic.twitter.com/OTwB6uSBNo
— Dementia Friends (@DementiaFriends) October 29, 2024
Mama Nell’s experience at the nursing facility turned out to be “horrible”. She eventually moved back in with Shanklin’s mom, with Shanklin as the primary caregiver.
Though her relatives had Medicare, insurance does not cover non-medical home care. Personal care assistance is considered private and must be paid out of pocket.
Quitting her job in May 2013 meant that Shanklin’s income plummeted from a regular corporate salary to almost zero.
With her mother suffering from the same condition, Shanklin did not have the option of taking on a full-time job while caring for her mom and grandmother.
She started volunteering and doing freelance graphic design work but couldn’t take on a full-time job as the salary would just be enough to cover the cost of care for her mom and grandmother.
Personal care assistance requires an hourly payment of at least twenty-five dollars, while the cost for a spot at a memory care facility typically falls within the range of $4,000 to $5,000 each month.
Dementia Care Warriors
Mama Nell died in 2017, and Shanklin started the non-profit charity Dementia Care Warriors in 2019, with the mission of helping Texas-based family caregivers who are caring for relatives suffering from Alzheimer’s disease or other related dementias.
The organization supplies guidance to individuals seeking free senior companions, who receive support from other charitable organizations for their caregiving duties.
Her Mom’s companion goes out to eat with her for 5 hours a day, 4 days a week. Short as they may be, it provides a much-needed break for the carers.
This nonprofit also offers social support to caregivers like herself. They seek each other out and enjoy each other’s company because they’re living the same life as carers.
Shanklin remains resourceful and intentional in her efforts to support other caregivers.
The truth about dementia care
Shanklin’s story highlights the high financial and personal cost of caring for relatives with dementia and the need for support systems like Dementia Care Warriors.
Many people face similar challenges, and it’s essential to explore solutions that can help alleviate some of this burden.
One potential solution is long-term care insurance, which can cover non-medical home care or placement in a memory care facility.
Another option might be hiring professional caregivers or exploring adult day programs for those who need social interaction and stimulation.
While these solutions may not eliminate the costs entirely, they could help make caregiving more manageable.
As Shanklin’s story demonstrates, caring for loved ones with dementia requires significant sacrifice and dedication.
It’s essential to prioritize the needs of their loved ones while also considering their own well-being and financial stability.
A Dementia Friend learns about dementia and then turns that understanding into action. We all have a part to play in creating dementia friendly communities
Dementia Friends USA
By supporting caregivers like Shanklin and exploring innovative solutions, we can all contribute towards creating a more compassionate and inclusive society that values the contributions of family members who care for loved ones with dementia.
Support systems out there
Dementia Care Warriors is one of several organizations making a difference in the area of providing support for those with dementia and their caregivers.
Shanklin’s story shows that it’s possible to make a positive impact even in the midst of great challenge.
With organizations like Dementia Care Warriors leading the way, there is a brighter future for caregivers and those they support.
The Alzheimer’s Association offers resources on caregiving, including online support groups and educational materials.
Another organization, the National Family Caregivers Association, provides advocacy and education on issues related to caregiving.
Long-term care (LTC) insurance
The journey of Veronica Shanklin highlights the complexities of caregiving and the need for comprehensive support systems that address both emotional and financial needs.
By exploring solutions like long-term care insurance and adult day programs, they can work towards creating a more sustainable future for caregivers.
LTC insurance is “coverage that provides nursing-home care, home-health care, and personal or adult daycare for individuals age 65 or older or with a chronic or disabling condition that needs constant supervision.”
It would normally cover all (full home care coverage) or some of the cost of in-home care. LTC insurance would cover expenses for a visiting or live-in caregiver, housekeeper, therapist or private-duty nurse. It could cover up to seven days a week and 24 hours per day, up to the policy benefit maximum.
Clearly, LTC insurance is something that we should all make a point of getting in order to avoid the burden of long-term care should it hit our household one way or another.
As it is a private insurance, it comes with a price tag. Those who can afford to get it should do so as early as the age of 45.
LTC insurance, like most insurance, is cheaper when you buy it younger; but getting it too early would mean that you will be paying for coverage longer before you will actually need it.
Also worth noting is the fact that LTC insurance can be tax-deductible “if the policy is tax-qualified and the policyholder itemizes tax deductions, among other factors.” Make sure to ask about this, and always read the fine print before committing to any insurance plan.
In the country, Genworth is the largest in terms of the number of policyholders for LTC insurance.
