For most older adults, the idea of aging in place and staying at home for as long as possible is an attractive one.
However, for seniors who’ve been diagnosed with Alzheimer’s disease or another form of dementia, finding the balance between safety and support at home can be a challenging prospect. And it often falls to an adult child, spouse or other family member to provide the bulk of the care to people with dementia who are trying to remain at home.
Caring for a Parent With Dementia
Alzheimer’s disease and other forms of dementia are progressive neurological diseases that cause a loss of cognitive function, which includes the ability to think, reason or remember, reports The National Institute of Neurological Disorders and Stroke.
Over time, these changes interfere with a person’s ability to manage the daily tasks of living. What may start as forgetfulness or being occasionally tongue-tied can progress to needing round-the-clock care.
Often, a family member must lead the charge in caregiving before the decision to move to memory care or another long-term care facility is made; the Centers for Disease Control and Prevention reports that approximately 1 in 5 U.S. adults provides care to family members or friends who have a chronic health condition or disability.
This journey can be emotionally draining and physically taxing for caregivers, but finding the right information and support can help ease some of the burden.
[Read: What to Do When You Become the Family Caregiver]
Seek Professional Help
According to the CDC, there are more than 100 different types of dementia, from Alzheimer’s and vascular dementia to Lewy body and frontotemporal dementia. Parkinson’s disease and other neurological conditions can also cause dementia and dementia-like symptoms.
Each disease has its own specific features and prognosis; therefore, it’s critical to get the correct diagnosis.
When you first start noticing symptoms, make an appointment with your parent’s primary care doctor or geriatricianto find out what’s going on. In many cases, they will refer your loved one to a specialist who can provide additional guidance and care depending on the exact diagnosis.
“Don’t be afraid to ask doctors or specialists questions,” urges Moraima Castañeda, Oregon-based CEO of MLC Health Solutions, a clinical and organizational transformation consultancy serving the health care sector.
With the right diagnosis, your loved one’s medical team can develop an appropriate treatment plan and point you in the right direction for additional support.
Local dementia care services
Consider reaching out to local aging-related organizations, which may provide resources for support, training and respite care. The National Association on Area Agencies on Aging offers online tools to find your local agency.
“Those area organizations on aging can really help you get that local support and piece together the team that’s going to care for your loved one,” says Dr. Rhonda L. Randall, Florida-based executive vice president and chief medical officer, employer and individual, at UnitedHealthcare.
You’ll also want to find out what’s covered by your parent’s health insurance and what their financial responsibilities might be. Call the health insurance carrier and speak with a case worker about which resources and benefits are available
For some, this may include VA benefits related to military service or Medicare and Medicaid, which also offer resources.
[READ: Common Caregiving Tasks to Do for Your Older Loved One]
Learn More About Their Condition
Once you have a diagnosis, learn as much you can about your loved one’s disease so you’ll know what to expect and how to respond to any situations that may arise.
For example, people with dementia are known to believe they’re speaking with the deceased, which spooks many new caregivers. But if you know that people with dementia can hallucinate, it helps you make sense of that behavior and respond appropriately. If your father has dementia and is “conversing” with your mother, who died a dozen years ago, instead of reminding him of that loss, you might redirect his attention with a nice memory: “Dad, do you remember when Mom would spend hours in the kitchen preparing picnics for us on Sundays in the park?”
Instead of insisting that your loved one acknowledge reality as you know it now, you can spare them potentially reliving grief by redirecting and reminiscing about happy times.
[READ Rapidly Progressive Dementia: Reasons for a Sudden Worsening of Dementia Symptoms]
Make the Living Space Safe and Supportive
Many homes are filled with potentially dangerous obstacles and hazards for a person with dementia. For instance, they may lose the ability to lift their feet high enough to clear rugs when they walk.
As mobility declines, the risk of injury increases. To lower these risks, it’s a good idea to adjust the living space. Castañeda recommends:
— Increasing lighting to help with visibility,especially as visual acuity declines with age
— Removing rugs, such as throw rugs and other decorative floor furnishings that can be tripping hazards
— Decluttering the home to give your loved one enough room to maneuver safely
— Avoiding the front burners of the cooking range to reduce accidental burns
— Installing handrails in the bathroom to reduce the chances of falling
— Using outlet covers and drawer and cupboard locks to keep your loved one from accessing knives, cleaning products and other potentially dangerous items
— Using door alarms to will alert you if your loved one attempts to leave the home. Wandering and elopement, when a person with dementia either intentionally or unintentionally leaves the facility or home, is a common concern.
— Adding an identification bracelet in case your loved one manages to leave the house unsupervised
Think Ahead
All types of dementia are progressive, which means over time, your loved one’s condition will deteriorate. Whether that timeline takes years or months, it’s a good idea to plan ahead for what’s coming.
When thinking and planning ahead:
— Discuss end-of-life care and advance directives with your parent and their doctor.
— Consider long-term care options, such as assisted living or nursing home care.
— Make arrangements for finances and legal matters.
— Respect your loved one’s privacy and dignity by offering them as much agency to make their own decisions as possible.
Simplify Communication
The Alzheimer’s Association recommends streamlining communication with your loved one to ease comprehension as dementia progresses. Your loved one will lose at least some of their language capabilities, so keep these strategies in mind for simplifying communication:
— Use clear instructions and set up reminders. For example, set a timer for routine tasks, such as going to the bathroom, having a drink of water or taking medication.
— Speak slowly and clearly. Also use simple language because comprehension becomes more difficult for a loved one with dementia.
— Use gestures and visual cues. Your loved one may lose certain words or terms from their vocabulary, but if you show them an item in question, they may still understand what it is and what it’s used for.
— Avoid arguing. When your parent says something incorrect or nonsensical, think before you correct them; whatever they’re focused on may not matter, and insisting on factual accuracy may only distress them further, Castañeda says. For example, “if the person says it’s summer, in a calm voice, you can say, ‘I love summertime.’ It doesn’t matter if it’s fall or winter. You do not need to prove this to them.” Resist the temptation to argue with your parent, and consider whether therapeutic lying might sometimes be the right approach.
— Maintain respect. People with dementia are often made to feel invisible, and it’s hurtful. Brenda Avadian, a caregiving expert and spokesperson for people with Alzheimer’s disease and dementia and their families, has shared what patients wish people knew: “Do not be afraid of me. Look at me and feel free to speak directly with me — not only with my caregiver. I may not understand you, and my replies may not make sense, but I am still human. Dementia does not define me.”
Manage Activities of Daily Living
During early stages of the disease, people with mild dementia symptoms may need only a few changes to their care, such as help following a scheduled routine to aid their memory or clearly labeling where personal items belong.
However, as the disease progresses, individuals with dementia will need increasing help with managing the activities of daily living, such as:
— Bathing and personal hygiene
— Dressing
— Walking
— Toileting
— Eating and preparing meals
— Household management, including laundry, shopping and paying bills
While you may be able to manage most of these things, consider whether a professional in-home caregiver is better suited to help, particularly as your parent’s condition declines.
And when their condition becomes too much to manage at home, consider a move to a memory care facility.
“It will be a difficult choice but one that may be necessary,” Castañeda says.
Promote Mental and Emotional Well-Being
Caregiving for someone with dementia doesn’t just mean looking after their health needs. It also means helping to enrich their life despite the disease.
One way to do that is to establish a reliable daily routine, as this can provide comfort and security to someone who’s losing their ability to understand the world around them.
In addition, helping them stay connected to others can improve their quality of life and potentially slow progression of the disease.
“Involving the loved one with dementia or Alzheimer’s in daily family activities — like eating together and walking around the block — can help keep them active and socially engaged,” Castañeda says.
Think about what your loved one liked to do before they were diagnosed, and consider ways you can keep a variation of those activities going.
“There’s a difference between engagement and entertainment,” says Eleonora Tornatore-Mikesh, CEO of CaringKind, a New York City-based Alzheimer’s and dementia caregiving support organization. “It needs to be what makes every individual tick. That’s when you know the person feels nourished.”
Your loved one might enjoy:
— A conversation about their hobbies and memories
— Listening to their favorite music and singing along
— Spending time with a pet
— Going outdoors in the sunshine
— Having opportunities for socialization and interaction with their peers to avoid loneliness
Music therapy for dementia patients
In particular, music has been shown to be especially supportive for people with dementia. Because music taps directly into the amygdala, a part of the brain that regulates emotions, music therapy has the power to unlock long-forgotten memories, improve mood and boost feelings of well-being.
You can use music to help calm an agitated senior or help them reminisce about days gone by. Use music at the same time every day to help your loved one stay connected and relaxed, or work with a therapist who specializes in using music therapy for dementia patients to build a tailored program.
Take Care of Yourself
Too often caregivers are so consumed with caring for their parent that they neglect their own health and well-being. Practicing self-care, however, can go a long way toward avoiding burnout.
Take the time to look after yourself when caring for a parent or other loved one with dementia by focusing on:
— Getting quality sleep. When you’re overtired, it’s difficult to think clearly and respond appropriately when your loved one needs assistance. Aim for seven to nine hours per night to ensure you’re getting enough quality sleep.
— Eating a healthy diet. Good nutrition will give you the energy you need to be alert and strong to support your loved one. Eat a healthy, well-balanced dietthat limits ultra-processed foods, and be sure you’re drinking enough water.
— Socializing with friends and family.Being the primary caregiver for a loved one with dementia can be a lonely endeavor. Make time to socialize with family and friends to maintain the social connections that will support your mental health and overall well-being.
— Staying physically active. Exercise is great to burn off stress and keep you healthy and focused. The CDC recommends adults get 150 minutes of moderate-intensity physical activity each week. Spread across the week, that’s a little over 20 minutes a day.
— Joining a support group. Making connections with other caregivers who are facing the same challenges you are can help you feel less alone. A caregivers support group may also provide practical, actionable advice that may ease some aspects of caregiving for your loved one.
“If you’re not taken care of, you can’t properly take care of someone else,” Castañeda says.
Remember, It’s a Disease
Watching a parent or other loved one slip away via dementia can be excruciatingly painful, especially for the primary caregiver. As the disease progresses, it can result in hallucinations and delusions that appear to alter a loved one’s personality, which can make being around them unpleasant at times. (According to the Alzheimer’s Association, hallucinations involve sensory perceptions such as seeing, hearing and tasting, while delusions are false beliefs, including bouts of paranoia.)
Beyond day-to-day care, delusions wrapped in paranoia can be particularly difficult to manage. For instance, a misplaced wallet, purse or keys can result in accusations of family caregivers and even professionals: “You took my purse!” “You stole my money!” “I haven’t eaten in a week.”
To deal with this kind of development:
— Keep in mind that it’s not your loved one who’s saying or doing these things — it’s the disease. And regardless of how we react to our loved ones’ hallucinations and delusions, we must remember that they are real for them, so don’t attempt to challenge their reality. Instead, try to go along with and comfort them.
— If you can, take a break. Step outside for a breath of fresh air, count to 10 or go for a walk. Getting just a little distance from an incident can help you regain perspective and remember why you’re helping in the first place.
— Stay positive. While dementia is often a challenging journey, it’s important for caregivers to celebrate the abilities their loved one still has. “Often, caregivers only think about the functions that their loved one has lost, but optimism is contagious, and it will lift both of your spirits,” Castañeda says.
Cultivate Compassion
In all situations, keep compassion as your guiding notion. Consider how you’d want to be cared for if the roles were reversed, and strive to ensure your loved one gets even better care than you’d expect.
It’s also important to consider what life is like from your loved one’s point of view. If you had their diagnosis, what fears and uncertainties might you feel? How would you handle the loss of physical and mental ability and sense of identity that comes with dementia? What comforts and supports might help you cope with those changes?
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Dementia Care: Tips for Home Caregivers originally appeared on usnews.com
Update 05/09/25: This story was published at an earlier date and has been updated with new information.
