Dementia Care 101: The Diagnosis
Alzheimer's disease and other types of dementia are becoming increasingly common. Currently, more than 6 million Americans are living with Alzheimer's, and by 2050, that number is projected to double. If you have a loved one who was recently diagnosed, it's important to understand the basics of dementia care. While these diseases affect everyone differently, there will inevitably come a time when tough decisions need to be made.
To help ease the burden, we've created a blog series specifically for people who provide care for loved ones with Alzheimer's disease or dementia. In this first installment, we highlight 5 steps to take following the initial diagnosis.
5 Steps Following Diagnosis of Dementia
1. Educate yourself
To provide high-quality dementia care, you must first understand the dementia diagnosis. There are different types of dementia, such as Alzheimer's, Lewy body, frontotemporal, and more. Kristen Osterhoudt, a caregiving expert and the regional coordinator for education and training at the Caregiver Support Initiative, a non-profit based in Plattsburgh, New York, says, "In the early stages of dementia, I always recommend that caregivers use the time to educate themselves on the disease and plan ahead for the future." She continued, "not everyone will experience all of the same symptoms or the same disease progression, but I do find that it helps to make a plan that can be adapted as their needs change."
David Bernstein, MD, a geriatrician with more than 40 years of experience, agrees. "Learn everything you can about the diagnosis, and see if there are clinical trials being done. The benefit here is that there's an additional set of eyes on the patient and a higher level of support."
(Pro tip: To learn more about clinical trials for Alzheimer's Disease, click here.)
Jim Dan, MD, a geriatric clinical advisor and member of the Senior Helpers Board of Directors adds, "for family and friends who want to be supportive and competent caregivers, learn and engage. Learn about Alzheimer’s and dementia, the stages of the diseases, and the expected changes in behavior and physical capacities. Knowledge helps gain confidence in providing care."
2. Determine your loved one's needs and develop a care plan
Alzheimer's disease and dementia progress at varying speeds. Sometimes, it takes weeks or months for visible symptoms of dementia to develop; other times, it takes years. As symptoms progress, one may require laboratory testing, imaging, and visiting a neurologist with medical history to understand the risk factors.
Rick Lauber, the author of The Successful Caregivers Guide and Caregiver's Guide for Canadians, says that when caring for someone with dementia it's "better to be proactive rather than reactive." That means that even if your loved one's symptoms are mild, it's important to start planning for the future.
Lauber continued, "help can take many forms—personally, I moved Dad (repeatedly); became a joint signer on his bank account and paid his ongoing bills; drove him to doctor's appointments; accompanied him on regular walks for exercise; advocated for him; and, in due course became his Joint Guardian and Alternate Trustee."
If you're unsure where to begin, talk to your senior directly.
"A lot of times people want to help but aren't sure how," said Osterhoudt. "Ask your loved one what they could use help with. Maybe they need someone to help them run errands because they're no longer able to drive. Maybe they need a companion to go for walks with or go grab coffee with. Maybe they need help with housework, or the lawn or cooking meals."
Obviously, the amount of assistance someone can provide depends on a variety of factors. To minimize stress or arguments, Lauber recommends assigning caregiver tasks based on a person's "strengths, weaknesses, availability, and physical location."
If your senior's needs become too much to handle, you may want to consider a nursing home, respite care, or other care options.
3. Establish a daily routine
Providing care for someone with Alzheimer's disease or dementia presents unique challenges. As these conditions progress, it's common for people to experience behavioral changes like aggression, confusion, restlessness, or agitation. Establishing a daily routine can significantly improve your loved one's quality of life.
Raymond Dacillo, Director of Operations for C-Care Health Services in Toronto, Ontario, emphasizes this point.
"Establishing a daily routine can help your senior feel more normal. For example, you can start your day off with them by going on a walk in the morning and then giving them a cup of tea and their favorite breakfast when you get home. In the evening, after dinner, you can let them watch their favorite show with their favorite dessert. Setting up a routine lets them know what is going on throughout the day."
As a complement to a daily routine, Dr. Bernstein recommends implementing the "Power of 5." This means focusing on five specific factors that encourage a healthy brain:
Sweat (regular exercise)
Avoiding sweets (sugars and carbs)
Managing stress (through meditation, yoga, or deep breathing)
When these issues arise, it can be tempting to argue with or scold your senior, but that will likely make things worse. "It's very important that you join [your loved one's] world instead of arguing with them and dragging them back into our reality. This can really help you stay patient, and avoid conflict," said Osterhoudt.
4. Take advantage of available resources
More than 11 million Americans provide unpaid care for people with Alzheimer's and other dementias. As a result, there's a wealth of caregiving information available both online and in print.
Some of our favorite resources include:
Alzheimer's Foundation of America (separate chapters exist in many states)
AlzAuthors.com (A collection of authors who have written books about Alzheimer's and dementia)
The 36 Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease, Related Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins
The Power of 5 Test Kitchen Cookbook by Melissa C. Bernstein, OT, FAOTA
Another excellent (but often overlooked) resource is the Alzheimer's subreddit. Heather Keita, an in-home caregiver, and home care services specialist says, "I frequent this form either to seek comfort or to give it to others. Sometimes a random stranger on the other side of the world is all the assurance you need to know that things aren't that bad."
5. Make time for self-care
If you're busy providing personal care for someone else, it can be challenging to make time for yourself. Still, self-care is absolutely necessary. Just as your loved one needs engaging daily activities to stay occupied, you need time away to relax and refresh.
Caring for someone with a neurodegenerative illness isn't easy. "No one expects to become a caregiver or have their loved one diagnosed with Alzheimer's Disease or dementia," said Osterhoudt.
"It's very common for someone whose loved one receives this difficult diagnosis to have a lot of emotions from denial, to sadness, to grief, to anger, to fear. Take time to work through those feelings. You may want to confide in a trusted family member, journal, take walks, or meditate. Consider joining a support group, or seeing a therapist. "
No matter how tempting it might be, don't just "push through" the emotions you're experiencing.
"Self-care isn't selfish," said Osterhoudt. "In order to be the best caregiver you can be for your loved one, you need to first take care of yourself."
Chad Birt is a freelance B2B and B2C medical writer who resides in Astoria, Oregon. When he isn't behind a keyboard, you can find him hiking, camping, or birdwatching with his wife Ella and their two dogs, Diane and Thoreau.