Caring for someone with Alzheimer’s disease can be a stressful and highly emotional journey. But you aren’t alone. More than 16 million caregivers are caring for someone with Alzheimer’s or other types of Dementia in the United States.
Knowing what to do and what to expect can help make life more manageable and enjoyable for you and those living with Alzheimer’s as well as better prepare for the future.
We put together this guide to help you manage the challenges of being an Alzheimer’s caregiver, find the support you need, and learn how to improve your loved one’s quality of life.
What is Alzheimer’s Disease?
Alzheimer’s Disease is a degenerative brain disorder that affects memory, behavior, and thinking skills. It’s the most common form of Dementia, a term for loss of memory, language, problem-solving, and other thinking abilities that eventually affect the person’s ability to function independently.
Causes and Treatment of Alzheimer’s Disease
Abnormal build-up of proteins in and around brain cells is thought to cause Alzheimer’s. There’s not much known on what may trigger Alzheimer’s disease, but several factors can increase your risk of developing the condition, including:
- Family history
- Down Syndrome
- Brain Injury
- Cardiovascular Disease
*Alzheimer’s Disease and Dementia are not a normal part of aging.
There’s currently no cure for Alzheimer’s disease. However, there are treatments and medications available to help manage symptoms.
Symptoms of Alzheimer’s Disease
Alzheimer’s affects each person differently at different stages of the disease but may cause:
- Getting lost in familiar places
- Continuously losing and misplacing things
- Forgetting events, memories, people, and places
- Trouble communicating
- Mental decline (aggressive, agitated, irritable, depressed, anxious)
- Difficulty thinking or concentrating
- Meaningless repetition of words
- Problems with self-care and other everyday tasks
Statistics and facts about Alzheimer’s Disease
What to know about Alzheimer’s:
- Life expectancy from diagnosis is between four to eight years. The progression of the disease can vary, and some people can live past 20 years.
- Around 6 million Americans are living with Alzheimer’s.
- Early-onset or young-onset Alzheimer’s is a disease that affects people younger than age 65. (around 6% of people with Alzheimer’s Disease)
- People with early-onset Alzheimer’s usually start to show symptoms between 30 and 60 years old.
Ways to help a family member living with Alzheimer’s
In the beginning stages of Alzheimer’s Disease, your family member may not need much assistance. Their physical, mental, and emotional needs will become more apparent as they move through the different stages. Using these tips can help you both through this journey with Alzheimer’s.
Accept the diagnosis with patience
Receiving an Alzheimer’s diagnosis can be devastating and heartbreaking for the person with the disease and their family members. The best thing you can do as a caregiver is to help them understand their condition, make plans for the future, and help your loved one remain as active, healthy, and engaged as possible.
Give your family time to process the news, feel all the emotions, and grieve. But know that accepting the diagnosis will allow you to seek resources, support, and engage in early Alzheimer’s intervention.
Educate yourself about Alzheimer’s Disease
While every individual’s experience with Alzheimer’s can be different, learn as much as you can about the condition and how it progresses. The more you know, the better you’ll be able to prepare for future challenges, ease frustration, foster realistic expectations, and support your loved one’s independence and quality of life.
Contact your local Alzheimer’s Association for valuable information and resources.
Engage the person with Alzheimer’s in conversation
It’s important to involve the person in conversation even as their ability to participate becomes limited. Whether they are repeating words or sentences or aren’t speaking at all, there are still ways to help them communicate more effectively no matter what stage of their journey.
Helpful tips for communicating with someone with Alzheimer’s Disease:
- Make eye contact
- Don’t talk over them- if they are in a wheelchair, sit in a chair, so you are on their level.
- Be aware of your tone and body language.
- Use other approaches besides speaking, like holding their hand while you talk.
- Show a warm, loving, matter-of-fact manner.
- Be open to the person’s concerns, even if they are hard to understand.
- Ask Yes/No questions, one at a time.
- Avoid asking: remember when?
- Be patient with angry outbursts, or if they become frustrated
- Offer simple, step-by-step instructions
- Never talk as if they aren’t there. Even if they aren’t communicating back, always involve them in conversations.
- Don’t use “baby talk” or a “baby voice.”
Alzheimer’s is a progressive disease, which worsens as time goes by. Your loved one’s symptoms and needs will also alter over time, so you will need to learn to adapt to these changes. Techniques, like reminders or relaxing breathing, may work one day and not the next. If something is no longer working, don’t use it anymore.
Instead, seek advice and help from those who have had similar experiences. An Alzheimer’s Support Group is a wonderful resource for connecting with others.
Be mindful that many symptoms of Alzheimer’s, such as aggression or wandering, often require a very individualized approach. Talk to your doctor or other healthcare professional about treatment options.
Meet them where they are and validate their feelings
A simple way to understand how Alzheimer’s and Dementia affect memory is to think of a clock moving backward; the most recent memories will fade first. Eventually, you might find your loved one anxiously waiting for their mother to come home to make dinner, even though their mother has been deceased for several years.
This is where validation techniques come in. Address their feelings at that moment, rather than correcting your loved one on facts or accuracy. If they think it’s senior year of high school in 1945, avoid trying to “reorient” them to the correct year. Instead, identify their feelings related to that year. Are they reminiscing about a happy event? Meet them exactly where they are and ask more about it.
If your loved one is visibly upset and showing signs of anxiety or worry, it might feel like reorienting them is the correct thing to do. For example, your mom passed several years ago, so you don’t need to wait for her for dinner. Again, meet them where they are and determine the feeling behind their statement. From there, you can redirect them with questions about those feelings like, what is your favorite dish your mom made? What did you love most about your childhood home? Chances are they will start talking about these memories and forget about being upset.
Remember, wherever they are, memory-wise is their reality.
Take care of the caregiver
If you’ve ever been on an airplane, what does the steward/stewardess say after, “should the cabin lose pressure, oxygen masks will drop from the overhead area above”? Please place the mask over your mouth and nose before assisting others. That’s because, without an oxygen mask, you can lose consciousness quickly. Therefore, you can’t help anyone else.
The same goes for being a caregiver of someone with Alzheimer’s. There will be many great moments in your caregiving journey, but there will also be times of tension, frustration, and challenges. Caring for yourself is one of the most critical things you can do as a caregiver for your loved one.
Some ways to take care of yourself:
- Ask for help from friends and family to give yourself breaks. If you don’t have a strong support system, find local professional caregivers who offer respite support.
- Exercise- even if it’s just a 10-minute walk every day around the neighborhood.
- Laugh everyday
- Tell yourself it’s okay to cry
- Find community resources and support groups
- Listen to music
- Incorporate different relaxation techniques into your daily routine- yoga, meditation, journaling
- Eat balanced, healthy meals
Being a caregiver for someone with Alzheimer’s can be difficult and frustrating, but also extremely rewarding for both you and your loved one. Utilizing these tips and using the resources below will help you in your caregiver journey.
Boston Clinical Trials
If you or your loved one have received a diagnosis, you might be eligible to participate in an Alzheimer’s Disease clinical research trial.
National Institute on Aging: Alzheimer’s and related Dementias Education and Referral Center
800-272-3900 (toll-free, 24/7 helpline)