When a loved one receives a diagnosis of Alzheimer’s disease, family caregivers may feel at a loss, but there are concrete steps they can take to ease this phase of life.
The statistics about Alzheimer’s disease can be staggering. More than 5 million Americans are currently living with the disease according to the Alzheimer’s Association. Sixteen million Americans provide unpaid care for people with Alzheimer’s or other dementias. Unpaid caregivers provide an estimated 18.6 billion hours of unpaid care.
The weight of those facts can be overwhelming for a person who decides to care for a family member with the disease at home, unless they are prepared with knowledge of how best to adapt to their loved one’s current state.
“The person with Alzheimer’s will experience short-term memory loss so they won’t remember things they have learned recently, and they won’t be able to learn new things,” says Melissa Tucker, director of family services at the Alzheimer’s Association Illinois Chapter.
“They are still intelligent and creative. They are still the people they were before Alzheimer’s, but their ability to plan for the future begins to fade away,” Tucker says.
The more caregivers know about Alzheimer’s disease, the better prepared they will be to meet the challenges and be able to take care of their loved one with patience and empathy.
Make caregiving easier
Here are nine adaptations caregivers can make to their days when caring for someone with Alzheimer’s:
1. Create structure. Because people with Alzheimer’s have difficulty planning and lose track of time, create a large calendar for them noting their events and appointments each week, says Cissie Gerber, assistant agency manager at Right at Home North Suburban Chicago.
In addition, make sure they have a notepad and a pencil handy, so they can jot down things they want to remember. “It gives the person something to think about and keeps the brain’s neurons firing,” Gerber says.
She also recommends establishing a simple daily routine with a regular pattern, adaptable as circumstances change, based on the loved one’s likes and dislikes. This will give the person a sense of time, reducing their anxiety and confusion. “A good structure may slow down the progression of the symptoms a little bit,” Gerber says.
2. Offer limited choices. Because a person with Alzheimer’s can find it difficult to make choices, the caregiver should simplify the number of choices they have to make. “When they get dressed, they may feel overwhelmed by a closet full of clothes, so select two outfits for them every day and ask them which one they want to wear,” Tucker suggests. “The rule is true in all other aspects of daily living: Simplify the choices.”
3. Get moving. Regular physical exercise is an extremely important part of the day’s routine for people with dementia. “Research has shown that exercise protects the brain and may slow cognitive decline,” Tucker says. Talk to the doctor about a safe exercise routine, such as taking a 30-minute walk five days a week.
4. Initiate activities. It is important for the person with Alzheimer’s to remain engaged with friends and involved in activities they previously enjoyed. “People with Alzheimer’s may seem to withdraw, but they might no longer have the ability to initiate an activity,” Tucker explains. “They may also be embarrassed because they can no longer participate in the conversation or the activity, and they are aware of the stigma of the disease.”
The caregiver can call the person’s friends to schedule a get-together to keep them engaged in a way that is comfortable for them. “Social engagement is important because when the person with Alzheimer’s is isolated, the caregiver gets isolated,” Tucker says. During the pandemic, caregivers can help set up Zoom get-togethers.
5. Get familiar. Favorite activities can add meaning to the lives of people with Alzheimer’s. “It’s important to individualize the activities based on the ones they are familiar with, otherwise they won’t be engaged in them,” Tucker says.
Someone who had enjoyed cooking, for example, can still prepare a simple dish but will need help following the recipe steps. “You can simplify the activities so they enjoy them and feel good about accomplishing them,” Tucker says.
6. Embrace the arts. Art activities can be beneficial for those with dementia. When the person with Alzheimer’s is losing their verbal ability, art gives them the opportunity to express the feelings they can no longer articulate, Tucker explains.
Music can also play a unique role for people experiencing memory loss, as our brains retain memories of music. “People with dementia often enjoy music even into the late states,” Tucker says Music they liked in the past can create emotions that help to recall memories. Familiar upbeat music can boost their mood, and soothing music can have a calming effect.
If the person experiences sundowning — a group of behaviors that can include kicking, screaming, and swearing, which occurs at dusk when day turns to evening — caregivers can use soft music to prevent or ease agitation, Gerber says.
7. Address their needs. If a loved one has difficulty expressing themselves verbally, caregivers can ask themselves five questions to pinpoint any unmet needs:
- Is the person hungry?
- Are they thirsty?
- Do they need to use the bathroom?
- Are they bored?
- Are they in pain?
8. Ensure rest. A person with Alzheimer’s can get overly tired from the morning tasks of daily care, such as dressing and grooming, along with the exertion of activities. It can be helpful for their afternoon routine to include a nap of no more than one to two hours after lunch.
“Late afternoon after 3 p.m. should also be a quiet time without distractions when the loved one can do a simple activity such as folding towels or calling a family member on the phone,” Gerber says. “Hearing is the last sense to be lost for a person with Alzheimer’s, so they can recognize a familiar voice even if they don’t know the person’s name.”
9. Show and tell. As symptoms progress, Gerber recommends that caregivers practice what is called “show and tell.” She says, for example, if their loved stares at the food at mealtime and doesn’t pick up their fork to eat, don’t assume they no longer know how to use a fork.
“Hand them their fork, and show them the process for using it. If it doesn’t work the first time, re-show them,” she says. “This goes for every aspect of daily living. This gives them the opportunity to remain as independent as possible. And the more independent they are, the happier they will be and the happier the caregiver will be.”
For more information contact the Alzheimer’s Association: 24/7 Helpline, 800.272.3900; alz.org