When Alzheimer’s comes early, families need answers

Part 3 of Our Times’ series on Alzheimer’s disease

“There’s no way she could have Alzheimer’s at her age.” That is what one daughter recalls hospital staff saying about her mother, even though she had already been diagnosed. Her mother was 57 when she received the diagnosis. She died at 60.

The daughter asked Our Times to withhold her name. This is the first time she has shared her family’s story publicly. “My mom was my best friend,” she said. “She was my everything. It’s only by the grace of God that I’m still walking right now.”

In the first two parts of this series, we looked at the toll Alzheimer’s takes on families and at steps people can take to support brain health. In this final part, we look at treatment and the help available when a family is living with the disease. Her story shows how those needs can change, sometimes faster than a caregiver can prepare for them.

Her mother worked in factories and took care of her family. Looking back, the daughter wonders whether difficulty keeping up with bills was an early sign that something was changing. After moving back home in 2012, she noticed her mother sometimes did not eat and seemed less interested in seeing family and friends. She thought depression might be part of it. Dementia did not come to mind.

By 2020, she knew her mother needed help. A counselor noticed that she struggled to keep up during group sessions and recommended a cognitive assessment. That led to a referral to a neurologist.

“I felt so bad because I had no clue what had been going on,” the daughter said. “It would have never come to me that this was dementia.”

Alzheimer’s is most common in older adults, but it can develop before age 65. The Alzheimer’s Association estimates that about 200,000 Americans ages 30 to 64 have younger-onset dementia. The daughter hopes that talking about her mother will help other families, and the professionals caring for them, consider the possibility sooner.

“I feel like the conversation around early-onset Alzheimer’s needs to be had,” she said. “Other people may not recognize it, including health professionals.”

Treatment goes beyond medicine

There is no cure for Alzheimer’s disease, but treatment may help manage symptoms. Medicines such as donepezil and memantine may be prescribed at different stages to help with memory and thinking. Two newer treatments, lecanemab and donanemab, can slow decline for some people in the early stages who meet specific medical criteria. They also carry risks, including brain swelling or bleeding, and require medical monitoring. None of these treatments works for everyone, and families need to discuss the possible benefits and risks with a clinician.

The daughter took her mother to a dementia specialist in Indianapolis. She was grateful that he explained what the family might expect as the disease progressed. But she soon learned that managing Alzheimer’s involved much more than keeping appointments or filling prescriptions.

At home, her mother could become upset or resist a shower. The daughter learned to pay attention to what might be causing distress and to try again later when a task was not urgent.

“You want to make sure they get their hygiene done, but if they miss the showers, whoop-de-doo,” she said. “If you’re stressing them out, that makes things worse.”

People living with Alzheimer’s may experience changes in sleep, mood and behavior. A familiar routine and a comfortable environment can help. Families and clinicians also need to look for other possible causes of distress, including pain, infection or side effects from medication. Diabetes, high blood pressure and other health conditions still need care, even as Alzheimer’s changes what that care requires. Hearing and vision problems can make communication and daily activities harder, so they should not be overlooked.

The daughter saw how easily those needs could be missed. During a hospital visit, she said, her family told staff that her mother had Alzheimer’s and struggled to swallow pills. She remembers having to speak up again as staff tried to give her medication. She wanted the people treating her mother to understand both the diagnosis and what worked for her on an ordinary day.

Medication can sometimes be considered for troubling symptoms such as agitation, but that decision calls for a careful assessment of what is causing the behavior and the risks of treatment. For this daughter, learning how to redirect her mother and help her feel safe became part of everyday care.

Finding help at home

The daughter became her mother’s primary caregiver, with help from her sister and aunt. SWIRCA & More helped the family arrange care while she worked. Still, frequent turnover among home health aides disrupted the routine her mother needed. Eventually, she encouraged relatives to apply to provide care so her mother would see familiar faces.

She remembers one aide who took her mother onto the back patio to plant tomatoes. It gave her mother something familiar and enjoyable to do.

As her mother’s needs grew, Deaconess Palliative Care helped the family think through care and find support. The daughter wishes she had known about it sooner.

“The palliative care team gave me, ‘You can do this’ and ‘You’re doing this,’” she said. “I needed to hear that.”

Later, leaving the house for medical care became difficult. A home-based care team that could visit her mother eased some of the daughter’s worry. She no longer had to figure out how to get her mother to an appointment every time a new concern arose.

Families may also need to talk early about future care: who can help make decisions, what support is possible at home and what a loved one would want if their condition worsens. Those conversations can be painful. They can be even harder when a family has to make them in the middle of a crisis. The daughter remembers discussing those questions while caring for her mother and wishes some of the support had come earlier.

Nearly 13 million Americans provide unpaid care to someone with dementia, according to the Alzheimer’s Association. More than one-third of dementia caregivers are daughters, and 59% report high or very high emotional stress. The work may happen inside a home, but its demands reach into jobs, finances, health and relationships.

“When you’re a caregiver, you lose friends too,” the daughter said. When she could no longer go out or make plans, some people stopped calling.

That burden deserves particular attention in the Black community. Older Black Americans are about twice as likely as older White Americans to have Alzheimer’s or another dementia, according to the Alzheimer’s Association. The organization also reports barriers to getting excellent care and support among Black families. These figures cannot explain any one person’s illness, but they make timely answers and accessible care all the more important.

Making room for a life after caregiving

The daughter’s grandmother died in September 2022. Her mother could not understand why her own mother no longer came to visit, and the daughter believes her condition worsened in the months that followed.

The next April, the family celebrated her mother’s 60th birthday at home. They kept the gathering quiet because loud noises bothered her and served her favorite ice cream and cake. Her mother could still talk, though conversation had become harder. Within weeks, she could no longer walk or eat as she had before. Hospice became part of her care. She died at home in May 2023.

The daughter still thinks about what she did not know at the beginning: what the early changes might mean, which services were available and when to ask for more help. She wants other caregivers to have that information. She also wants them to give themselves room to learn.

“I beat myself up a lot about the things I did not know,” she said. “Caregivers need to give themselves grace.”

For years, coming home meant returning to care for her mother. More than three years after her mother’s death, she said she still has a hard time breaking the habit of going straight home. Now she is beginning to find her way into a different life.

“I’m just starting to be at a place where I’m getting back to ‘the new me,’” she said. “Things are not the same.”

After so long coming home as a caregiver, she is learning how to come home for herself.

Where families can turn

SWIRCA & More Resource Center: Call 812-464-7817 or visit 16 W. Virginia St. in Evansville. SWIRCA can help families explore in-home care, caregiver support, meals, medical equipment, Medicare, Medicaid, Social Security, housing and long-term care options. Families can call even if they are unsure which service they need.

Support for caregivers and people living with dementia: SWIRCA’s Dementia Caregiver Support Group and Living with Dementia Support Group meet at the same time, on the last Monday of each month from 2 to 3 p.m. at SWIRCA. Its Family Caregiver Support Program can also help families explore counseling, training and respite options.

Meals and daytime care: SWIRCA can provide information about Meals on Wheels and other nutrition services. Riverwalk Communities, at 401 SE Sixth St. in Evansville, offers adult day care with activities and social interaction. Families should ask a provider directly whether its services fit their loved one’s needs.

Alzheimer’s Association: Its 24/7 Helpline, 800-272-3900, offers information and support to people living with dementia and their families.