Your loved one was diagnosed with Alzheimer’s disease. Now what?

Living with Alzheimer’s is challenging — and so is caring for someone with the disease. You’re in a new and unfamiliar role. To best support your loved one, it helps to understand what to expect.

People with Alzheimer’s want to live well for as long as possible, states the Alzheimer’s Association. As a caregiver, you play an important role in helping your loved one achieve these goals.

Symptoms of Alzheimer’s usually develop slowly and get worse over time. As the disease advances, your loved one’s needs will change. How much assistance do you give and when do you give it?

While the progression can vary by individual, here’s what you can expect at each stage of the disease:

Early stage

Early-stage Alzheimer's can last for years and the symptoms are generally mild. Your loved one can likely still dress, bathe, walk, drive, socialize and work independently.

Your main role as caregiver is to provide companionship and support, and help plan for the future. You can support your loved one’s everyday tasks and help them develop coping strategies to be as independent as possible. Your loved one may need help with keeping appointments, remembering words or names, managing a daily schedule or household budget, keeping track of medications, etc. Assume that your loved one is capable of completing a task. Step in only when needed.

Since your loved one still has the capacity to make decisions about the future, it’s a good time to talk about end-of-life care wishes, including legal, financial and long-term care planning.

Middle stage

The middle stage of Alzheimer's is usually the longest and can last for many years. During this stage, damage to the brain can make it difficult for your loved one to express thoughts and perform tasks. Your loved one may jumble words, repeat questions, lose train of thought, have trouble dressing, get agitated or angry, feel anxious or depressed, or act in unexpected ways (e.g., have verbal outbursts, wander). Your loved one may rely more on non-verbal communication.

Your role as caregiver will be to take on more responsibility as it becomes more difficult for your loved one to function independently. Your loved one may need increasingly more help with housekeeping, meals, daily chores, transportation, paying bills, etc. Structure becomes more important.

During this stage, preventing wandering becomes a crucial part of care. You’ll also need to adapt daily routines and take safety precautions at home. Driving may no longer be safe. It may also become difficult or dangerous for your loved one to be left alone. If your loved one lives alone, he/she may need to move in with relatives or to a residential care facility.

Late stage

The late stage of Alzheimer's usually requires intensive care as your loved one’s needs are extensive now. Your loved one may have lost the ability to talk and express needs. Eating and swallowing, dressing, grooming, toileting, and walking will be more challenging as the disease progresses. Your loved one is also more vulnerable to infections, like flu or pneumonia.

Your role as caregiver focuses on preserving dignity and quality of life. At this stage, your loved one experiences the world mostly through the senses. Try playing your loved one’s favorite music, looking at old photos together, making their favorite foods and sitting together.

Your loved one may need full-time help with personal care. Deciding on late-stage care can be some of the most difficult decisions families face.  Eventually, you may need to consider moving your loved one to a residential care facility if you can no longer provide the appropriate level of care at home.

Get caregiving tips

The Alzheimer’s Association provides tips for how to care for a loved one with Alzheimer’s:

• Put safety first. As the disease progresses, ask yourself, is there an immediate risk of injury or harm for your loved one to perform this task alone? Put home safety measures in place.
• Create a daily routine. Promote sleep, encourage exercise and interaction with others. Prioritize tasks to reduce unnecessary stress for your loved one.
• Encourage independence but be ready to help when needed. Check in regularly by asking your loved one what they need, what frustrations they have and if you’re providing the right level of support for them. You can give direction indirectly.
• Stay calm. You can help improve communication by making simple changes. For example, speak slowly using a calm voice when responding to repeated questions. Your loved one may just need reassurance.
• Create a help signal. Identify a cue (e.g., a nod) or phrase (e.g., “Is there anything I can do to help?”) you can use to signal that your loved one is comfortable receiving help. This means that it’s OK to chime in if your loved one is having difficulty, such as remembering a word or name.
• Encourage your loved one to share his/her feelings. Your loved one may want to try journaling. Connecting your loved one with other people with Alzheimer’s can be helpful, too.
• Find activities you both enjoy to do together. This can help reduce wandering and agitation. You don't need to invent new things to do. Try making dinner together, listening to music or going for a walk.

Take care of yourself, too

Caring for a loved one with Alzheimer’s can be incredibly stressful. It’s important to take care of yourself too, especially as your caregiving responsibilities become more demanding. Take breaks, even for just a few minutes. Do things to improve your well-being and reduce your stress. Also, try not to take things personally. Learn how to manage the challenges of caregiving.

Also, you don’t have to do this alone. There are resources available to help. Sharing ideas and experiences with other Alzheimer’s caregivers in a support group or online message board can be very helpful. There are organizations that offer helpful resources and information for caregivers, such as the Alzheimer’s Association and The Caregiver Space.

If you have symptoms of depression, seek help from your doctor or a professional counselor. Get support from Linden Oaks Behavioral Health.

Remember, there will be challenging days, but there also will be good days. Try to appreciate the good days spent with your loved one.

Learn more about our support for Alzheimer’s disease.

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