Estimated reading time: 7 minutes
- Understanding Alzheimer's: Learn about the common symptoms of Alzheimer's disease and how they impact the caregiver’s role in providing support and care.
- Tips for Alzheimer's Caregivers: Discover practical strategies for caring for someone with Alzheimer's, such as encouraging independence, sticking to a routine, simplifying communication, ensuring safety, and seeking professional help when needed.
- Taking Care of Yourself: Recognize the importance of self-care as a caregiver and explore ways to reduce stress, connect with other caregivers, prioritize personal well-being, and utilize online resources for tracking your loved one's progression and communicating with care teams.
Being a Caregiver for Someone With Alzheimer's Disease
We have all likely heard about Alzheimer's, whether it was in the news or entertainment, but it is a very different experience when you are touched personally by the intense disease.
Alzheimer's disease is a type of dementia that affects memory, thinking, and behavior. Caring for someone with Alzheimer's is often labor-intensive, challenging, and stressful, both physically and emotionally. As the disease progresses, your loved one may need more support and attention, leading to increased caregiver burden. However, with some proactive planning and self-care strategies, you can take control of your combined health journeys.
Alzheimer's Disease Symptoms
Alzheimer's is a progressive disease that begins with mild cognitive impairment and eventually leads to severe memory loss and impaired thinking. The signs and symptoms of Alzheimer's disease include:
- Memory Loss: Forgetting important dates/events and struggling to remember recently learned information.
- Difficulty Planning or Solving Problems: Difficulty following a plan, working with numbers, or solving problems.
- Difficulty Completing Simple Tasks: Struggling to complete tasks that were once easy, such as cooking, dressing, or washing.
- Confusion with Time or Place: Losing track of dates, seasons, or the passage of time. Difficulty remembering where they are or how they got there.
- Problems with Communication: Struggling to find the right words or completing thoughts, and difficulties holding conversations.
- Mood and Personality Changes: Becoming anxious, depressed, or suspicious. Acting out of character, withdrawing from social situations.
Caring for Someone with Alzheimer's
As the caregiver of someone with Alzheimer's, you play an essential role in maintaining their physical and emotional health. It can be overwhelming to manage all of their care. Here are some tips to help you provide the best possible care for your loved one:
- Encourage Independence as Much as Possible: The person with Alzheimer's may get frustrated or feel anxious about their loss of memory and independence, so letting them do something as simple as putting their clothes on may give them a sense of purpose and satisfaction.
- Stick to a Routine: A consistent routine can help the person with Alzheimer's feel more comfortable and reduce anxiety. Make their activities predictable, and avoid sudden changes whenever possible.
- Simplify Communication and Encourage Play: Speak slowly and use clear language. Eliminate any distractions that might interfere with your message, such as TV or background noise. Offer visual cues when possible. Emerging research also shows that playing games and using technology like Virtual Reality (VR) can actually help manage some of the Alzheimer's symptoms and create a positive experience for both the patient and caregiver.
- Ensure Safety: Remove any tripping hazards or sharp edges. Install grab bars and non-slip mats in the bathroom. Lock up hazardous materials like cleaning supplies or medications.
- Seek Additional Professional Help: To ensure your loved one is getting the care they need, consider getting professional help from a healthcare provider in addition to their neurologist and other physicians, including home health aides or occupational therapists. They are often covered by your insurance plan, or you can find assistance programs that can help cover the cost.
- Explore Clinical Trials: Clinical trials can help you gain access to new treatments before they are widely available. These treatments may slow disease progression or improve symptoms. Participants receive individualized care and support which can do wonders for quality of life. PatientsLikeMe is actively recruiting for Alzheimer's clinical trials, see if your loved one qualifies today.
Taking Care of Yourself
Taking care of someone with Alzheimer's can be very time-consuming and all-encompassing. It can feel impossible to prioritize yourself each day, but you deserve care, too. The PatientsLikeMe community can offer some helpful tips on small ways they have maintain their well-being you can try too.
Connect with Other Alzheimer's Caregivers
Join a support group or an online community like PatientsLikeMe to connect with others who are going through similar situations. You are not alone. Asking direct questions to a community of people who are going through the same thing can teach you so much.
Take Time for Yourself
Take some time off, even if it is just a few hours a week. It is important to recharge and practice self-care activities like yoga, reading, or taking a warm bath. This is a great place to enlist the help of family, friends, or even outside resources like adult day care centers and therapists. Ask your case manager or primary care doctor for how to access some of these programs. You don't have to do it every day, but give yourself time off. You can recharge and come back ready to help.
Reduce Alzheimer's Caregiver Stress
Find ways to manage stress levels through exercise, meditation, or deep breathing exercises. You can access a lot of these from free apps, online meditations, or YouTube classes, so you don't even have to leave the house to give yourself a moment to pause, breathe, and focus. Research shows that online tools can provide significant stress reduction. No need to do anything that takes you physically away from your loved one if you don't have the time.
Look after Your Physical Health
A healthy diet, regular exercise, and a good night's sleep are important for maintaining your physical health. Try planning your meals ahead of time and grocery shopping just once for the full week with that plan so you don't need to reinvent the wheel each night and you know that what you are making is healthy. Also, try joining community activity challenges or finding a friend to walk with for accountability.
Use Online Resources for Alzheimer's Caregivers
Use online resources like PatientsLikeMe to connect with other caregivers and track your loved one's progress. The site allows you to track your loved one's symptoms and treatment efficacy, making communication with their healthcare team easier and less time-consuming. You can also learn new treatment options and get access to first-look clinical trials that you can bring back to your doctors.
In Conclusion
Caring for someone with Alzheimer's can be both challenging and rewarding. The progressive nature of the disease can cause a significant burden on caregivers, both physically and emotionally.
By connecting with others, asking for help, finding new digital therapies, tracking your loved one's progression, and communicating with their healthcare team, you can focus more on spending time with your loved ones and support them fully. Remember, you are not alone on this journey. There are resources available to help and support you along the way.
