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.
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
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.”
Takeaway
Frequently asked questions
How long can you do at-home care of a parent with dementia?
Many families choose to care for their loved ones with dementia at home. People with dementia can live at home for a significant period; however, it typically depends on symptom severity, the disease’s progression, and the level of support available. Eventually, the need for professional help in an assisted living facility or nursing home may arise as their needs become more complex.
In the early stages of dementia, people might live independently at home with minimal assistance from family caregivers. As the loved one’s dementia progresses, increased aid with tasks in daily life might be necessary. During the middle stages, individuals may eventually require assistance from a professional home caregiver. In the later stages, as dementia becomes more severe, 24/7 care might be needed either at home or in a personalized care facility.
When deciding how long you can care for a parent with dementia at home, consider the following:
- The rate of cognitive decline
- Coexisting medical issues
- Your physical and emotional capacity to provide adequate care
- Your access to resources like respite care, professional home care services, and family support
- The potential for safety issues, such as a risk of falling, wandering off, or self-harm due to cognitive decline
- Your parent’s ability to perform everyday activities and basic self-care tasks independently
What happens to caregivers of dementia or Alzheimer's disease patients providing long-term care?
Caregivers of people with dementia or Alzheimer’s may experience a range of physical, mental, and practical challenges. Caregiving often comes with high levels of stress, overwhelm, and exhaustion. Depression, anxiety, and lower levels of self-efficacy are possible. Caregivers can experience worse physical health outcomes, including higher levels of stress hormones, compromised immune response, and greater medication use. Caregivers can experience social isolation and a lack of time for self-care activities. People caring for someone with dementia may also experience economic hardship and relationship strife.
What are the four Rs of dementia care?
The four Rs of dementia care is a framework established by experts to guide caregivers in creating a supportive environment for individuals experiencing dementia. They include:
- Reassuring the individual that they are safe and cared for
- Reconsidering things from the individual’s perspective
- Redirecting the person’s focus to calming activities
- Relaxing your words, tone of voice, facial expression, and bodily language
What is the role of a caregiver in mental health?
Caregivers in mental health may assume many roles, providing different types of support. For example, mental health caregivers might help with daily living activities like cooking, cleaning, transportation, and medication management. They can provide assistance in navigating mental health services and insurance complexities, communicate with health care providers, and advocate for treatment.
Some mental health caregivers accompany patients to therapy sessions and support them during treatment planning. A caregiver might be responsible for monitoring changes in mood, behavior, and functioning to identify potential relapses or worsening symptoms. They may also be trained to recognize signs of and respond appropriately to crises. Finally, caregivers may provide emotional support by listening actively, offering encouragement, and giving individuals a safe space to share their emotions and experiences.
How do you keep a dementia patient safe at home?
Maintaining a consistent routine and keeping a consistent layout in the home provides a good foundation for keeping a dementia patient safe. Communicate in simple language, provide clear instructions, and be patient when interacting with the person with dementia, as it may take a few seconds longer to do things they once did more easily. The Alzheimer’s Association has a list of recommendations to help assess your environment’s safety and keep dementia patients safe at home. Key suggestions for keeping the site properly safe include:
- Declutter walkways and surfaces to reduce tripping hazards and cognitive overload
- Secure loose rugs and electrical cords, remove throw rugs, and use contrasting colored tape on stairs for better visibility
- Lock away or remove medications, cleaning supplies, sharp objects, firearms, toxic plants, and other potentially hazardous items
- Ensure bathroom safety by installing grab bars in the bathtub and shower, using non-slip mats and a sturdy shower chair, and installing a raised toilet seat to prevent falls
- Use appliances that have an automatic shut-off feature, disconnect the garbage disposal, and turn off the gas when not in use
- Set the water heater to a safe temperature to prevent burns
- Remove knobs or use knob covers, and cover outlets with safety plugs
- Ensure adequate lighting throughout the house, especially at night
- Label doors clearly with pictures or words to help the person identify where they are going
- Keep windows, doors, and cabinets secure with child-proof locks
There are safety devices available that can help, too. For example, consider using motion sensors, bed alarms, or other monitoring systems to alert you if the person needs medical care, gets up at night, or leaves a designated area. Install door alarms and consider a monitored GPS tracking device.
What adjustments to care might be needed for dementia?
When determining what adjustments might be needed to care for someone with dementia, consider the severity of symptoms as well as the individual’s unique preferences and abilities. One may need to make adjustments at home to create a safe and familiar environment. Establish a consistent schedule to serve meals, take care of personal grooming, and engage in social activities. Once routine tasks might need to be broken down into smaller steps or adapted to accommodate their abilities. Schedule ample time for task completion and breaks if necessary.
Becoming more mindful of how one interacts with the individual might take some adjustment, too. For example, one may need to use more straightforward language and shorter sentences, speak slowly and clearly, and patiently repeat information as needed. Respect their personal space and dignity and be compassionate. It can be frustrating or demoralizing to lose the ability to care for oneself; individuals with dementia may need extra reassurance and positive reinforcement.
Caregivers may need to make adjustments to take care of themselves, too. If you’re taking care of someone with dementia, seek support for managing stress and maintaining your well-being. Ask for help from friends and loved ones so you can get adequate sleep and participate in hobbies or other activities you enjoy. Consider reaching out to a support group or therapist to help you cope with the challenges that come with caregiving.
How do you help someone with dementia who lives alone?
Living alone with dementia often requires planning, organization, helpful tools, and support from friends and loved ones. Here are a few tips for helping someone with dementia manage living on their own:
- Ensure the home is safe, well-lit, and hazard-free
- Secure or limit access to outdoor areas in case of “wandering”
- Help them create a consistent schedule for things like eating, sleeping, bathing, dressing, and social activities
- Write down appointments, to-do lists, important phone numbers, and other information somewhere prominent where they can easily see it
- Use aids like easy-to-read clocks, large calendars, reminder timers, and personal alarms
- Use a pill dispenser to help the person take their medications appropriately and on time
- Arrange for visits and social activities to prevent isolation
- If possible, consider hiring a house cleaner, shopper, companionship care, or other in-home caregivers
- Prepare or update the person's will, living will, and durable powers of attorney.
How do you care for a parent with dementia at home?
The best way to provide home care for a parent with dementia will likely vary depending on symptoms, stage, and preferences. Communicate with their physician regularly and use resources like The Alzheimer's Association, Alzheimer's Foundation of America, and the National Institute on Aging (NIA) for advice on developing a care plan and locating support programs in your area.
Create a safe environment at home with clear visual cues, prioritize a consistent routine, and communicate simply and clearly. Encourage them to stay social and participate in activities they enjoy. Assist with daily tasks while allowing them to do as much as possible independently. Often, caring for someone with dementia requires spending time prioritizing your own physical and mental health. Take breaks, seek support from friends and family, and use respite services to manage stress, maintain social and professional relationships, and pursue hobbies that nourish and bring you joy.
What is best for dementia patients?
Dementia treatment is multifaceted, and what is best for one patient might not be for another. A close relationship with one’s healthcare providers and regular support from friends and loved ones are key. Remaining physically active, eating nutritiously, getting adequate sleep, and managing stress can help improve balance, strength, and cardiovascular health, as well as help counter dementia symptoms.
People with dementia might benefit significantly from a structured daily routine with gentle exercise and cognitive activities that help maintain mental function. Regular communication with friends and family can keep them from feeling isolated and alleviate depression. Additionally, people with dementia might utilize assistance with household chores, meal preparation, appointments, and self-care to remain independent longer.
Cognitive rehabilitation therapy can help dementia patients maintain and improve their cognitive function. Some dementia patients require medications to manage specific symptoms like memory loss or agitation. Finally, some dementia patients benefit from transitioning from short-term care to a retirement community or 55 and older community. A secure community might offer safety features and areas for higher levels of care.
What should you avoid when caring for dementia patients?
There are several caregiving behaviors that can cause additional challenges and, in some cases, put some dementia patients at risk. Here are a few things to avoid when caring for a dementia patient:
- Arguing, contradicting, complaining, or criticizing
- Using an aggressive tone
- Rushing them
- Asking “don’t you remember?” questions
- Discussing sensitive topics like death, recent losses, or past mistakes
- Using overly complex language
- Taking challenging behaviors personally
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