Tips For At-Home Care Of A Parent With Dementia

Witnessing a parent or other loved one experience the progressive decline of dementia can be very challenging. While it can be rewarding at times as well, caring for them at home can also present additional challenges—from arranging your space to accommodate their needs to managing the stress of daily care as the dementia progresses to juggling other responsibilities like work or childcare. That’s why caregivers are at higher risk of developing anxiety and depression as well as burnout and other stress-related conditions. Read on to learn about considerations for your shared physical space, common needs of dementia patients at various stages of their illness, and other information, tips, and resources for caregiver support.

Caregivers need support too

Get connected with a therapist

Arranging your home for dementia and Alzheimer’s disease caregiving

If you’ve decided to have a parent with dementia live in your home, one of the first orders of business may be to make a few adjustments to your space to promote their well-being. Many people with dementia experience trouble with orientation in time and space, balance issues, wandering, agitation, and confusion—all of which may be mitigated with a few tweaks to the environment. Research suggests that modifying the physical environment may help support people with Alzheimer's in their daily activities.

Examples of some changes you may make to your home environment to promote your parent’s day-to-day well-being include:

• Ensuring rooms are brightly lit, with as much natural light as possible
• Reducing excess noise
• Ensuring the floors are even and free of rough edges or rugs, where slips are more likely to occur 
• Covering mirrors or removing them from areas the person is likely to enter
• Using contrasting colors to demarcate different areas
• Strategically placing labels and signs to help them navigate the home and find objects they may need

Care needs of dementia patients over time

Dementia is typically progressive, meaning that symptoms gradually worsen over time. This means that an individual’s care needs will change as the weeks, months, and years go by. If you’re caring for a parent with dementia, talking to their doctor about their particular condition and what to expect for its progression is recommended. As an example, let’s take a brief look at the evolving care needs of patients with Alzheimer’s disease, the most common cause of dementia, to help caregivers understand what to expect.

The early stages

In the early stage of Alzheimer's disease, when symptoms are mild, a care partner's primary roles may be to offer support when needed and help plan for the future. At this stage, the parent diagnosed with Alzheimer's disease or a related dementia may be able to function independently for the most part. 

As their caregiver, you might provide support by:

• Helping with reminders, such as keeping track of names or appointments
• Offering emotional support and listening to them
• Encouraging healthy habits, such as exercise
• Treating them with patience and compassion

Helping plan for their future might involve jointly making legal, financial, and other types of decisions related to their long-term care. 

The middle stages

The middle stages of the condition tend to last the longest. As dementia progresses, a person will usually need increasing help with daily functions, such as dressing, bathing, eating, and articulating thoughts. They may also begin to experience sudden and unexpected personality or behavior changes, such as lashing out angrily or saying unkind words. They may need closer supervision too, as wandering can become more likely and confusion more intense.

The later stages

During the final stages of dementia, round-the-clock care is often required, as the individual may no longer be able to walk, talk, move, or easily express their needs. They’ll typically require full assistance with bathing, eating, and other basic tasks. In addition to helping with these, the main role of caregivers during this stage is usually to promote comfort, safety, and a high quality of life as much as possible. 

Support for those caring for a parent with dementia

Looking for outside help for long-term care

Having one hundred percent of your parent’s care responsibilities on you alone for the duration of their illness generally isn’t sustainable. That’s why leaning on other family members, friends, and community members for help and support is usually recommended.

When personal at-home care of a parent with dementia is not possible

It can also be worth looking into other services for care support, such as:

• Home care services, which can send aides to your home on a regular schedule to provide different kinds of care, including personal care and companionship, for individuals with dementia—particularly in the earlier stages. In many cases, Medicare and other health insurance can cover some or all of these costs.
• Home healthcare services, which send licensed medical professionals to your home as needed, part-time, or full-time to provide nursing care, speech therapy, physical therapy, and other medical services—particularly in the later stages. While you will need a doctor's referral to qualify for home health services, Medicare and other health insurance may help cover the costs.
• Respite care, which involves a caregiver coming to your home to temporarily take your place in attending to your parent’s daily needs. It’s intended to provide you with a break or a “respite” from the stress and demands of full-time informal caregiving. There are locator tools online to help you find respite care services near you so you can inquire about availability and cost.

Joining a support group for caregivers of parents with dementia or Alzheimer’s disease

Having a support system can be invaluable for caregivers. While leaning on family and friends for practical and emotional support can be important, it may also be helpful to connect with other caregivers and individuals who are experiencing or have experienced similar situations. Whether you attend online or in person, a support group may allow you and your fellow caregivers to share information and resources and offer each other emotional support. 

You might ask your parent’s doctor for recommendations, check with your local hospital or senior center to see if they host meetings, or do an online search for virtual options. You might also explore the resources the Alzheimer’s Association offers, from a 24/7 caregiver helpline to training and educational courses on caregiving to locator tools for finding support groups in your area.

Engaging in self-care 

Again, caregivers are at increased risk of anxiety, depression, physical health conditions, and burnout. The Centers for Disease Control and Prevention (CDC) also reports that 36.7% of caregivers report getting insufficient sleep, and 40.7% have two or more chronic diseases themselves, which may develop or worsen due to the lack of time for their own care. 

Some ways to support your own well-being while caring for a parent with dementia include:

• Eating nutrient-dense foods as often as possible
• Joining a caregiver support group
• Seeing your doctor for checkups regularly
• Keeping in touch with friends
• Finding time for activities you enjoy, even if you have to do them in a lesser capacity
• Practicing meditation
• Exercising regularly—even a walk around the block each morning or some light yoga before bed
• Delegating responsibilities to others when possible

Caregivers need support too

Get connected with a therapist

Meeting with a therapist for the mental health of a caregiver doing dementia care 

Caregivers may also benefit from engaging in talk therapy. A licensed therapist may help you voice, process, and manage the complex emotions that caring for a relative with dementia can cause. They can also support you in developing healthy strategies for managing stress, addressing any symptoms of anxiety, depression, or burnout, and promoting your own mental health overall.

Caregivers tend to have busy schedules, so attending in-person therapy sessions may not be feasible. In cases like these, online therapy can be a more convenient option. With a platform like BetterHelp, you can get matched with a licensed therapist who you can meet with via phone, video call, and/or in-app messaging from home or anywhere you have an internet connection. 

A growing body of research indicates the potential effectiveness of online therapy for caregivers. For example, a 2021 study suggests that internet-based cognitive behavioral therapy (iCBT) “can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.”