10 Things to Know Right Away When a Loved One Is Diagnosed With Alzheimer's Disease

It can be overwhelming to receive the diagnosis: Mom or Dad's memory lapses and strange behavior are caused by Alzheimer's disease or a related disorder. The condition is irreversible, and you know your lives are going to change.

Senior couple consulting with expert

Dementia care experts and people who have been on this journey with a loved one say there are some important things to know right away:

1. You will likely experience a cascade of emotions. Even if you've suspected for some time that your loved one has Alzheimer's, you probably will likely feel grief at the official diagnosis — even if with it comes a certain relief at finally knowing what is causing the behavior and personality changes you've noted. You may go through grief stages as with any loss: denial that your loved one could really have dementia; mourning the loss of your former relationship and life with the person; and anger and resentment about the changes your loved one's condition will bring to your life. These emotions are normal. Learn all you can about your loved one's condition, and talk to a counselor who has experience in dementia caregiving.

2. You are not alone. The Rand Corporation recently calculated that in the U.S., 10 percent of people older than 65 have some form of dementia — that's 5 million people today. The number is projected to climb to 16 million by the year 2050. People with dementia and their loved ones are becoming more vocal, and there's power in numbers! Connect with them through informal gatherings, online chat groups, or best of all, join a support group. The Alzheimer's Association can help you locate a group in your area.

3. Our understanding of the causes of dementia is still a work in progress. In March 2018, the National Institute on Aging (NIA) noted that several types of changes in the brain can cause dementia — among them, vascular changes, the familiar plaques and tangles associated with Alzheimer's, and other abnormal protein deposits. These factors work differently, alone or together, in each individual, and it's not possible to predict the progression of a person's disease with complete accuracy. Research is ongoing. NIA director Dr. Richard J. Hodes noted, "The more accurately we can characterize the specific disease process pathologically defined as Alzheimer's disease, the better our chances of intervening at any point in this continuum, from preventing Alzheimer's to delaying progression."

4. Some lifestyle choices might slow the progression of the disease. There is no cure for Alzheimer's disease, and even people who practice a brain-protective lifestyle may still develop dementia. But some experts say that these same lifestyle choices — good nutrition, exercise, mental stimulation, socialization, and controlling other diseases such as diabetes and heart problems — may reduce symptoms of Alzheimer's. There is no guarantee; talk to your loved one's doctor about all lifestyle choices and treatments that might be beneficial.

5. The time for financial and healthcare planning is now. Create or update basic legal and financial documents, such as your loved one's will, living trust, and advance directives for healthcare and financial decisions. Talk to your loved one's doctor and attorney as you prepare these documents. As long as your loved one is able, they should be involved in these decisions. Have documents in place for the time when your loved one can no longer decide or say what they want. Be sure to obtain permission as early as possible that allows your loved one's doctor and lawyer to communicate with you as needed. Learn more from the NIA.

6. Today's care strategies are more person-centered and effective. We now know that people with dementia aren't going to adjust to the world. Instead, their world should adjust to them. Not so long ago, "reality orientation" was the main emphasis in dementia care. Today, we know that validation and "meeting the person where they are" work much better. We have new ways of looking at "behaviors" of people with dementia. Rather than medications to suppress agitation, wandering, aggression, sleep problems and other troubling symptoms, the goal is to understand and address the underlying triggers. (To learn how a Right at Home caregiver is following this approach, read "Finding Life's Purpose After the End of Spousal Caregiving" in this issue of the Caring Right at Home online newsletter.) You also will find more dementia-friendly activities in the community. Today, art museums, zoos, parks departments and other organizations offer programs for people with dementia and their caregivers.

7. Tell family members. It's good for them to know what's going on with your loved one. Family will be more understanding and young children will most likely be less frightened if they understand what's behind the changes in a beloved elder's behavior. Family also should consider their own genetic risk of the disease. The most common genetic risk factor is a variety of a certain gene, commonly called APOE4. Read "Genes, Lifestyle and the Risk of Alzheimer's Disease" in the April 2018 issue of the Caring Right at Home online newsletter to learn more.

8. Tell other people. The temptation to keep the diagnosis a secret is understandable. There's a powerful and insidious stigma associated with Alzheimer's. The decision about how much information to share is a personal one, to be made with your loved one. But consider that if friends don't know what’s going on, they may misinterpret personality changes. And openness is the best way to dispel the stigma. The Alzheimer's Association created a list of suggestions from people living with Alzheimer's, and at the top of the list was, "Be open and direct. Engage others in discussions about Alzheimer's disease. Myths about the disease are not a reflection on you. See this as an education opportunity. Advocate for yourself and millions of others by speaking out and raising awareness." Find more information about dispelling the stigma from the Alzheimer's Association.

9. Look into care options. Today, there are specialized care environments for people with dementia. As you research the available assisted living communities or skilled nursing facilities, select a place that will be able to care for your loved one's needs as their condition changes. They may offer short-term respite care, which also is available from adult day centers. These organizations often have a waiting list, so start the search early on. Most people with dementia want to stay in their own home as long as possible. You can make safety additions to make the home a better fit, such as improved lighting, safety knobs on the stove, special locks on the door, and securing items and substances that might be dangerous. Professional in-home care is another great resource to keep your loved one safe. Hire from an agency that provides dementia-care training for their caregivers. And remember, your loved one may resist giving up the car keys, so make alternative transportation part of the care plan.

10. Take care of yourself every step of the way. Providing care for a loved one who has dementia is stressful, and stress can affect your health, and even raise your own risk of memory loss. Ask for help so you can take a break for the things you enjoy. Don't neglect your own healthcare and exercise. Take a caregiver class — knowledge really is power. And as you take advantage of the services you've accessed, remember the golden rule of caregiving: Taking care of yourself helps you provide better care for your loved one.

Right at Home, Inc. is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned providers of in home care services.