Providing senior care for an older loved one is a demanding yet extremely important role. However, navigating a dementia diagnosis can be incredibly difficult for even the most seasoned family caregiver.
Caregivers of seniors who have dementia are very often faced with enormous amounts of stress, attests Dr. Rosmy Barrios who specializes in regenerative medicine. And while all caregivers are at risk for burnout, Barrios says the demands of caring for a loved one with dementia significantly increase these odds.
While it can be incredibly overwhelming caring for a loved one who has dementia, wrapping your head around the basics of their diagnosis as well as how to care for yourself can make for smoother sailing.
Getting and understanding a diagnosis
Dementia is defined as the loss of cognitive functioning by the National Institute on Aging. This can impact a person’s memory, reasoning skills and ability to think critically. Different forms of dementia exist, such as Alzheimer’s disease, so getting a diagnosis from a medical professional is key to understanding the type and extent of dementia your senior loved one has.
“Early symptoms of dementia are usually mild, such as problems with memory, but may gradually get worse,” says Barrios. “Early symptoms of dementia may include apathy, loss of interest in usual activities and mood swings.”
A few more signs of early dementia to look out for, according to Claudia Wong, a board-certified family nurse practitioner specializing in the care of memory loss, mild cognitive impairment, Alzheimer’s disease and other dementias:
- Memory loss
- Difficulty with short-term memory such as missing appointments
- Difficulty in communication such as finding the correct words to express an idea
- Difficulty in problem-solving
- Misplacing items
- Mood swings
- Getting overwhelmed with complex instructions
- Apathy
- Difficulty with paying bills
- Medication errors such as forgetting to take their medication or taking too much
- Weight loss, as may be forgetting to eat
- Poor insight, as in they struggle to recognize changes in their behavior
If you notice your senior loved one has been exhibiting these signs of dementia, Wong says addressing them with your family doctor is the right place to start to pursue a diagnosis.
“A primary care provider can do a simple in-office memory screen to see if there are changes in memory and cognition that can be picked up,” she says. “Potential workup can include MRI of the Brain or a PET scan of the brain, in-depth neuropsychological testing, labs to rule out reversible causes of memory loss — such as abnormal thyroid or vitamin B12 levels — and referral to a neurologist.”
Terri Corcoran, 72, from Falls Church, Virginia, who acted as a dementia caregiver for her husband, noticed changes in behavior and demeanor early on. “The earliest signs were not keeping up with his business commitments, not handling finances well — scam artists could sell him anything — occasional irrational anger outbursts and lapsing into apathy towards me,” she says.
What to expect as a dementia caregiver
Symptoms of dementia vary greatly from person to person. Your senior loved one may only exhibit memory loss — or may experience many symptoms at once.
According to Wong, a whole range of emotions such can arise in someone that has dementia such as:
- Delusions
- Hallucinations
- Agitation
- Changes in mood
- Anxiety
- Elation
- Apathy
- Disinhibition
- Irritability
- Motor disturbances such as pacing
- Sleep disturbances
- Changes in appetite
Symptoms may evolve and change over time, she notes. “Generally, at later stages, people with dementia are more withdrawn and not as talkative,” says Wong.
How to mitigate triggers
People with dementia might also contend with a variety of triggers, especially when they start to feel confused about where they are. Creating a familiar home environment that helps them know where they are can be beneficial for mitigating confusion, notes Wong. For example, if your loved one is visually impaired and is distressed by not being able to read the time, having a large, readable clock or smart speaker that reads the time aloud when prompted can help.
How to communicate most effectively
Your loved one’s ability to comprehend sentences and figures of speech may become compromised as well. Barrios recommends keeping sentences short and emphasizing the most important word with intonation in order to help those with dementia best process what you’re saying. “Avoid using figurative expressions because the patient can understand them directly, change negative statements to positive ones and so on,” suggests Barrios.
Contending with memory lapses
Memory lapses are also common in those with dementia. It can be incredibly distressing for dementia caregivers to watch their senior loved ones get key bits of information wrong. However, Wong says choosing your battles when it comes to making corrections may be more helpful.
“If your loved one with dementia gets the year wrong and insists and gets upset that they are correct when they are not, then it is not worth the frustration of being ‘right,'” she says. Not being able to remember things properly can also be upsetting for your senior loved one with dementia, so approaching the situation with kindness rather than correcting them can help with those feelings.
How to determine if you need extra support as a caregiver of a senior with dementia
When John Kapustka, 71, became a caregiver to his two parents with differing forms of dementia, he was unprepared for the role. “Being the only family member in the area, and because of the foundation of love that had been in our family, I thought I should try to help out,” he says. “But I had no idea as to what that would entail.”
One of the best things Kapustka says he did early on was to reach out to a caregiving organization for assistance, which provided him with much-needed insight about caring for a loved one with dementia. “The very first thing that I was told was to understand that every situation with dementia is unique,” says Kapustka. “Trial and error will show every prospective caregiver what will work specifically for them and their family member.”
Acting as a dementia caregiver for a loved one is a demanding job. Caregivers shouldn’t hesitate to reach out for help when they feel overwhelmed or in need. According to Wong, signs of caregiver stress and burnout can include:
- Depression and anxiety
- Feeling tired
- Having a difficult time relaxing
- Sleep issues
- Becoming irritable over minor issues
- Trouble concentrating
- Feeling resentful
- Neglecting responsibilities
- Feeling hopeless
- Feeling overwhelmed
- Engaging in habits such as smoking, drinking excessive alcohol, or pool appetite or overeating.
Don’t wait until these signs manifest to seek help if and when you need it. Resources like the Alzheimers Organization and Family Caregiver Alliance can provide dementia caregiver support.
Caring for yourself as a dementia caregiver
Finding and making time for yourself as a dementia caregiver can bring about feelings of guilt. However, you can’t provide the care your loved one needs if you’re burned out. Here are a few self-care tips from dementia caregivers who have been there.
Ask for and accept help
Acting as a dementia caregiver can be an isolating experience. Corcoran says it’s important to let the people in your life know what you’re going through and take them up on offers to help. “If anyone offers help, accept it, such as sitting with your loved one while you go out; helping with meals or chores,” she notes.
Hiring help, even on a part-time or as-needed basis, can free up time for much-needed self-care as well. Adult day care centers and paid companions that specialize in dementia care are two options that can provide a break from dementia caregiver duties. You can also hire a full-time caregiver or respite care, both options that can be especially useful if you work outside the home.
Find a support group
Connecting with others through a support group — either in-person or virtual — can help make the experience feel less lonely. Corcoran says it can serve as “a safe place to express all the sadness and frustration and despair that comes with watching a loved one succumb to dementia.”
Take small breaks
Both Kapustka and Corcoran say they had little time for themselves in the midst of their dementia caregiver duties. However, taking small breaks to do things that brought them joy went a long way.
“I didn’t have huge chunks of time to care for myself, but took reading or piano breaks when I could, even if it was for 10 minutes at a time,” says Corcoran. She recommends finding time for what nourishes your spirit — even if it’s in small doses.
