Receiving an Alzheimer’s diagnosis — whether for yourself or a loved one — is life-altering. Coming to terms with this diagnosis takes time and a strong understanding of what’s to come, and that can feel scary when you have no prior knowledge of the disease.
Once Alzheimer’s becomes a part of your life, the learning never stops. Each day will bring new symptoms, adjustments to your lifestyle, and changes in your relationships with those around you. Caregivers share some ways they started learning about Alzheimer’s and building their support system following a diagnosis, whether through family and friends, doctors, online communities, support groups, or educational resources.
Read what caregivers and experts have to say about moving forward and learning more about life ahead following a diagnosis:
Tom Stevens is the founder and CEO of TomBot, a company that creates robotic animals that transform the daily lives of individuals, families, and communities facing health adversities. He founded this company after his mother was diagnosed with Alzheimer’s. He shares his experience with receiving his mother’s diagnosis and offers advice:
“Though I had a basic understanding of Alzheimer’s, I didn’t have any practical knowledge. What was it like to live with an Alzheimer’s patient? How could I preserve my relationship with my mother while keeping her safe? Fortunately, there are many online resources available to family members, such as the Alzheimer’s Association, The National Institute on Aging, and medical journals. Reading more about the disease helped me understand that my mom was clearly suffering from BPSD – like 97% of Alzheimer’s patients. With diseases affecting mental health, we sometimes forget that they are just medical conditions like anything else. Realizing that my mom wasn’t ‘crazy’ or ‘evil’ helped me avoid taking her behavior personally.
“Try to take it one day at a time. Though the overwhelming majority of Alzheimer’s patients will experience some form of Behavioral and Psychological Symptoms of Dementia (BPSD), there’s no telling which symptoms they will encounter and how the disease will manifest exactly. We know that dementia is a progressive disease, but we never know how long it will take to progress. The family must reevaluate the situation periodically if and when the situation changes. Caregiver support networks are fantastic in this regard, as they help family members understand what sorts of challenges might lie ahead and provide support to others dealing with dementia-related challenges. Caregivers are the unsung heroes in this journey.
“Alzheimer’s and other causes of dementia are usually a long haul — on average four years from diagnosis to passing but often much longer. As the patient deteriorates, new challenges may arise. Families must keep talking and learning. If your loved one is suffering from dementia, please remember that you’re not alone. Reach out to family members, friends, neighbors, support networks, and local resources. And don’t forget to take care of yourself.”
Frank DiMaggio, the vice president of operations for LifeWorx, Inc., in-home care service in the greater New York, New Jersey, Connecticut, Sarasota and West Palm Beach in Florida, shares these tips from LifeWorx’s Alzheimer’s and dementia care guide:
“Don’t put off the conversation. It’s important to have a talk about Alzheimer’s symptoms and plan for care as early as possible – even before a family member exhibits signs of the disease. The sooner people get medical advice about potential Alzheimer’s symptoms, the better.
“Pick a comfortable time and setting. If you do sit down to talk to a loved one about possible signs of Alzheimer’s disease, choose a relaxed setting with limited distractions. If you know the person well, you may know what will work best for them.
“Get family and healthcare providers involved. If you’re having difficulty communicating with a loved one about Alzheimer’s, see if another family member or a close friend might be willing to try. It’s also important to get the individual to see a doctor right away for a comprehensive evaluation.”
“If you have to cross this desert, it will be difficult and tiring. You’ll often have doubts. But with love, patience, inventiveness, and humor, you’ll get through it together, hand-in-hand, enjoying the moments of happiness, laughter, and smiles along the way. Take care of yourself so you can take care of the person you love.” — Lily on Instagram
“I am sorry you are going through this. It is unfair, but the two of you will be able to do this together with love. It is a long journey, and you don’t have to know or do everything at first or by yourself. Not everybody will be there to help you, but that is okay because you are going to live with the group of people that will. Just breathe.” — Daria on Instagram
“Do not think of the person as their diagnosis. Do not obsess or over-research. Take notes and plan ahead, as things will need to be altered. However, do not forget the dignity of the individual.” — Lia Giordano
“Believe the diagnosis and educate yourself on what is to come. I do and continue to read everything I can while I can. I follow like stories on Instagram, which is equally good and bad, as it puts my future right in front of me. I think my sons are kind of burying their heads, but reality will take hold of them as the disease progresses. I was diagnosed last November, and though it is early, the changes are happening. My partner finally lets himself see clearly.” — Roberta Watson
“Ask all the questions before the memories are gone. Learn the recipes. Make albums and write important details. Make a playlist of their favorite songs. They will probably remember them even after the memories are gone, and it will give you a way to still connect with your loved one. Go with the stories they come up with, and learn to find it kind of funny.” — Melanie Sabri
“Find a support group. They will help you gather information about the disease; knowledge is important! You are not alone.” — Jane LaFountain
“Don’t get mad at the person if they repeat questions — you know the answers, but they don’t. If they did, they wouldn’t keep asking. People who are not trained in Alzheimer’s or dementia don’t understand that. My stepmom argued with my Dad over the most ridiculous things. You just have to agree with what they say (within reason) and avoid an argument. It’s so sad when I see families struggling with this.” — Darlene Rose
“The road from here on [will] be hard; it [will] demand a great amount of patience and courage, but never be afraid, for there are countless people that would help you along the way! Even if a day might be rough, never give up on your loved one, for you are all they have. ❤” — Resurrection Homecare
Al Estacion, agency owner of Angels Homecare Services, Inc., shares these ways to move forward after receiving a diagnosis:
“Alzheimer’s is a tough disease, both for the person who has it and their families. It can be really frustrating and confusing to watch someone you love slowly lose their memory, cognitive function, and a part of themselves.
“Learn more about the disease. The more you know, the better equipped and capable you’ll be to support your friend or family member. There are a number of reliable resources available online and in libraries. You can also talk to a doctor or nurse for more information on Alzheimer’s.
“Offer practical help. Families with loved ones with Alzheimer’s often need help with things like transportation, meals, and personal care. Offer to help with these tasks or provide financial assistance to help them hire a caregiver. You can also help out with household chores.
“Be understanding and compassionate. It’s important to be patient and understanding with families who are dealing with Alzheimer’s. Remember that they’re going through a difficult time. Sometimes, the best thing you can do is just be there for someone to listen and give any support you can.
“Encourage the person with Alzheimer’s to stay active and engaged. This can help to improve their mood and cognitive function. Suggest activities they enjoy, such as reading, listening to music, light exercise, or just simply spending time with loved ones.
“Help the family to access resources and support groups. There are many organizations that offer support to families with loved ones with Alzheimer’s. These organizations can provide information about the disease, caregiver training, emotional support, and/or financial assistance.
“Remember, Alzheimer’s is a difficult disease, but it is not a hopeless one. With the right support, people with Alzheimer’s can still live full and meaningful lives. If you’re looking for a way to help out families with loved ones experiencing Alzheimer’s, there are many things you can do. No action is too small when you are committed [to] delivering true care for those who need it the most.”
Jennifer Drake, an account executive at the United Disabilities Services response, shares her experience with a diagnosis within her husband’s family:
“We reached out to all her healthcare providers to understand the disease process and how her needs may change. Our family talked to her physician about care services, including non-medical personal care and respite care for her husband, and when was the right time to look into a secured facility to have her needs safely met in a nurturing environment.
“Talk to your healthcare team. They are the first line of knowledge regarding resources. Also, look into programs and support groups offered by the Alzheimer’s Association and Alzheimer’s-concentrated facilities. These groups can offer information from those already going through this as a family or caregiver. They might have some great tips, and you may share some things they might not know. Attend events and walks to learn the latest information or connect with a support service. As a caregiver, you will need to learn both how to take care of them and take care of you.”
“The diagnosis is hard to swallow…feel your feelings! Also, start to educate yourself — it’s not too early to find support.” — Lisa Palmquist.
“Learn as much as you can about the disease.” — Wanda Henly
“You need your family’s support. You don’t have to do it alone. Support groups are essential — you realize that others are also walking in your shoes.” — Kat Verdi, caregiver coach