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.
[Read: Caregiver Burnout and Strategies to Help]
Caring for a Parent With Dementia
Alzheimer’s disease and dementia are progressive neurological diseases that slowly rob people of their ability to care for themselves. 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 an assisted living community or long-term care facility is made, and this journey is often emotionally draining and physically taxing for caregivers.
Providing dementia care at home isn’t easy, but having the right information and support can make it easier.
[READ: Does Medicare Cover Dementia Care?]
Seek Professional Help
There are more than 100 different types of dementia, so it’s important to ensure that your loved one has the correct diagnosis. When you first start noticing symptoms, make an appointment with your parent’s primary care doctor or geriatrician and 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.
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 is covered by your parent’s health insurance and what their financial responsibilities might be. Call your loved one’s health insurance carrier to speak with a case worker who can walk you through their benefits and let you know what resources may be available.
For some, this may include VA benefits related to military service, so it’s important to find out what your loved one qualifies for. Medicare and Medicaid services also offer resources.
[READ: Hiring an In-Home Caregiver: What to Consider]
Make the Living Space Safe and Supportive
Caring for a loved one at home starts with a safe environment. Just like you might baby-proof your home when a toddler starts roaming about, adjusting the living space for a senior with dementia is critical to ensuring their safety.
People with dementia or Alzheimer’s disease “require a greater degree of care and supervision than other older individuals,” says Dr. Elizabeth Landsverk, a geriatrician based in the San Francisco area.
For instance, wandering and elopement, which refers to when a person with Alzheimer’s disease or dementia either intentionally or unintentionally leaves the facility or home, is a common aspect of the disease. While wandering can be managed in a safe environment, it becomes problematic and dangerous when the senior isn’t being supervised properly.
Nursing home staff know to watch out for problematic wandering and elopement, but the average unpaid family caregiver may not understand how best to manage this tendency.
In addition, many homes are filled with potentially dangerous obstacles and hazards for a person with dementia, who may over time lose the ability to lift their feet high enough to clear rugs when they walk.
As mobility declines, the risk of injury increases. To ameliorate these risks, Castañeda recommends:
— Increasing lighting to help with visibility. If your home isn’t well lit, finding your way around can be difficult, as visual acuity declines with age.
— Removing rugs. Throw rugs and other decorative floor furnishings might look nice, but they can quickly become dangerous tripping hazards, especially for people with dementia.
— Decluttering the home. Stacks of stuff on the floor are an accident waiting to happen. Clear out the clutter to give your loved one enough room to maneuver safely.
— Avoiding the front burners of the cooking range. Doing so may reduce accidental burns.
— Installing handrails in the bathroom. Giving your loved one something to hold onto can greatly reduce the chances of falling.
— Using outlet covers and drawer and cupboard locks. Installing these protections keeps your loved one from accessing things that could hurt them, such as knives and cleaning products.
— Using door alarms. This will alert you if your loved one attempts to leave the home.
— Adding an identification bracelet. If your loved one manages to leave the house unsupervised, they can readily be identified and returned home.
Simplify Communication
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, if your loved one is still somewhat able to look after their own needs, set a timer for routine tasks, such as going to the bathroom, having a drink of water or taking their medication.
— Speak slowly and clearly. Dementia can be an especially isolating disease as it progresses, because many patients lose the ability to communicate effectively with those around them. Understanding what someone is trying to tell them can also become very difficult, so when connecting with your parent, be sure to speak slowly and clearly and use simple language.
— 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.
— Provide comfort. Dementia can alter a person’s sense of time, place and general understanding of the world around them, including the season, their age, location and other details. This can be distressing for both you and your loved one. Provide comfort and support.
— 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 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 you 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
People with mild dementia symptoms during early stages of the disease 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, chief executive officer 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.”
You 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
Music therapy for dementia patients
In particular, music has been shown to be especially therapeutic 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, connect a person to their former self, shift a person’s mood and improve their feeling 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 diet that 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 Centers for Disease Control and Prevention 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.
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.
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 the person 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 the day-to-day care, delusions wrapped in paranoia can be particularly difficult to manage. For instance, a misplaced wallet, purse or keys will result in hurled accusations to 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.
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Dementia Care: Tips for Home Caregivers originally appeared on usnews.com
Update 03/14/25: This story was published at an earlier date and has been updated with new information.
