Homemade soup to soothe a cold, bandage changes to help heal an injury, care and support after surgery — there are plenty of times when you've stepped up as a caregiver for a loved one. But if your loved one has been diagnosed with Alzheimer's disease, your role as a caregiver may be much more involved than you're used to.
Alzheimer's is a progressive disease in which symptoms of dementia (memory loss and other declines in cognitive abilities) gradually worsen over time. Though caring for someone with this illness can be both emotionally and physically taxing, you're not alone in this journey.
Being a caregiver provides you with valuable time with your loved one and the assurance that they're in the hands of someone they know and trust. At the same time, it can be stressful. Family caregivers of people with Alzheimer's run the risk of developing anxiety, depression, and other factors that lead to poor quality of life.
Just as Alzheimer's progresses over time, the role of the caregiver evolves as the needs of the person you're caring for change. Here's how to care for your loved one during each stage of Alzheimer's — and how to care for yourself, too.
The Beginning of the Journey: Early-Stage Alzheimer's
The early stages of Alzheimer's bring about subtle changes, as most people are able to remain fairly independent. They may drive, visit with friends and family, and even continue working.
Symptoms of early-stage Alzheimer's include:
- Difficulty remembering recent conversations, events, or the date
- Repeating questions or stories
- Challenges or inability to manage tasks, such as finances, cooking, and shopping
- Withdrawal from social situations
- Challenges making decisions (and often, being easily swayed by others)
- Frequent disorientation or getting lost
- Denial of anything being wrong
Care During Early-Stage Alzheimer's
Changes may be minor during early-stage Alzheimer's disease, but your role as a caregiver is still major. To begin, your loved one may rely on you for support and companionship as they adjust to their new reality. What's more, you will need to begin thinking about the future for them and yourself.
Ways you can provide care during early-stage Alzheimer's include:
- Learning about the disease to prepare for the future
- Fulfilling family roles previously done by your loved one, such as driving, cooking, or taking care of the finances
- Planning for the financial implications of Alzheimer's, such as reviewing insurance coverage for health, disability, and long-term care
- Completing legal documents, such as a financial or healthcare power of attorney, which allow you to take over important responsibilities and decisions
Expanding Your Role as Caregiver: Middle-Stage Alzheimer's
The middle stages of Alzheimer's can be a major adjustment, as you may find your role becoming both more time-consuming and emotionally draining. You may experience challenging days — but there will also be times when you feel closer than ever to your loved one.
Symptoms of middle-stage Alzheimer's include:
- Emerging challenging behaviors, such as anger, paranoia, and overreacting
- Wandering or restlessness, especially in the late afternoon and evenings
- Problems with eating, bathing, grooming, going to the bathroom, and taking medications
- Increased challenges with verbal expression and comprehension
- Loss of ability to read and write
- Loss of coordination
- Potential loss of ability to recognize family and friends occasionally
Care During Middle-Stage Alzheimer's
Keeping your loved one safe is a priority during middle-stage Alzheimer's. Additionally, they will need care or supervision — possibly around the clock.
Ways you can provide care during middle-stage Alzheimer's include:
- Managing challenging behaviors by helping them to feel safe, speaking slowly, and finding different ways to say the same thing if they don't understand
- Making sure their home is safe and comfortable, such as moving around furniture to clear paths, installing a sturdy handrail on stairways, and placing brightly colored signs in important places like the bathroom and kitchens
- Communicating and maintaining a relationship with their care team
- Planning for future care, if necessary, such as in an assisted-care facility or with in-home help
Maintaining Quality of Life: Late-Stage Alzheimer's
During the late stages of Alzheimer's, the needs of your loved one will deepen significantly. Your role will shift into preserving your loved one's quality of life and making sure they remain as comfortable as possible.
Symptoms of late-stage Alzheimer's include:
- Inability to recognize people, places, and objects
- Loss of ability to communicate, walk, smile, and, in some cases, swallow
- Inability to control bowel or bladder
- Possibility of seizures and weight loss
- Need for full assistance with all personal care
Care During Late-Stage Alzheimer's
Extensive care is required in the late stages of Alzheimer's, and it might become more than you can provide at home. As a result, it may be necessary to move your loved one to an assisted-care facility or bring hospice services into the home.
Care during late-stage Alzheimer's includes:
- Making sure they are eating and drinking enough
- Assisting with all bathroom needs
- Keeping the skin and body clean and healthy
- Preventing infections like pneumonia
- Monitoring for signs of pain
- Providing comfort by looking through old photos together, cooking their favorite food, or simply sitting by their side and holding hands
Caring for Yourself — So You Can Care for Your Loved One
Caring for a loved one with Alzheimer's disease can be challenging. You may feel emotions such as denial, fear, anxiety, and anger — all of which are completely normal. Be sure to rely on your support system when possible, including family members, close friends, a support group, or a mental health professional.
It's also important to remain engaged in your own life. Take time to yourself, eat healthy, exercise regularly, participate in activities you enjoy, and check in on your own well-being.
As you provide care for your loved one, remember how valuable this time is for strengthening your bond. Celebrate the happy moments, share a laugh over a joke, and cry together when times get tough. Not only will these moments help put your loved one at ease, but they'll also remind you of the important role you're playing in their life.
Do you have questions about caring for a loved one with Alzheimer's Disease? Call 610-738-2300 to talk to a healthcare provider at Chester County Hospital.