According to the Alzheimer’s Association, an estimated 6.9 million Americans 65 and older live with Alzheimer's dementia, and 74 percent of them are 75 or older. That translates to millions of Americans living with a dementia diagnosis and many more millions of family caregivers providing support to them.

When your parent is diagnosed with dementia, it can be equally devastating for them and you. What should you do? What steps should you take to make sure that your parent has the care and support they need?

Here are four critical first steps you and your family should take when an older loved one gets a diagnosis of Alzheimer’s, or another dementia disorder.

1. Work with your loved one’s doctor to rule out treatable physiological causes.

Some forms of dementia aren’t caused by neurological deterioration. They could be side effects of other physical ailments like heart disease, brain masses, or intracranial bleeding. They also can be caused by over-medication or drug interactions from regular prescription regimens. In such cases, treatment of the underlying causes may improve or alleviate dementia symptoms.

Your parent’s doctor will likely order blood work and scans to rule out primary causes. Your loved one may need an MRI to look for evidence of tumors or stroke damage, or an echocardiogram to check for heart disease.

If the doctor suspects that polypharmacy or adverse drug interactions caused your parent’s dementia-like symptoms, he or she may attempt to control the symptoms by revising the medication regimen. You may be asked to help monitor your parent’s medication compliance and log symptoms to help the doctor reach a definitive diagnosis.

2. Ask questions and do your research.

Your parent will need a lot of understanding and support. Eventually, they will need caregiving from a family member, home nursing provider, or residential memory care household.

Regardless of where they receive memory support or nursing care, parents will become increasingly reliant on you to make well-informed medical decisions. Therefore, you should begin learning as much as you can about dementia caregiving as quickly as possible so you’ll be ready to make the right choices for your parent. Here are recommendations from the National Institute on Aging about How to choose a nursing home or other long-term care facility, including for memory care.

You should consider joining a dementia caregiver support group. There are several here in Cincinnati (see the blog link immediately below this paragraph).  The Alzheimer’s Association hosts online support groups where participants can ask questions, get advice, and find support. Click here to browse upcoming virtual and in-person events (After you fill in the required fields, look lower on the page to see the results of meetings near you).

Related Blog: Where to Find Support in Cincinnati When a Loved One Has Alzheimer's or Dementia

You also can learn quite a bit online, but use only trustworthy sources. Stick to information from reputable healthcare organizations, such as the Mayo Clinic, the National Institutes for Health, and the Centers for Disease Control and Prevention (CDC). Also, consult well-regarded dementia advocacy or dementia support organizations like the Alzheimer’s Association.

Another great service is Episcopal Retirement Services' blogs about dementia, and #MindfulMonday videos by Shannon Braun, director of ERS' Center for Memory Support and Inclusion. Those are located at TheERScenter.org.

Do not trust everything you read in commercial publications or on ad-supported websites like WebMD. Substantiate social media posts or sites presenting dubiously-sourced medical opinions or unsupported assertions. Most importantly, discuss anything you learn with your parent’s doctor before acting on it.

3. Work with your parent to make financial, legal, and medical arrangements in advance. 

If your parent’s dementia hasn’t yet progressed to the point that he or she is debilitated, make sure you work with them to develop a care plan.

Now is the time for your parent to choose a residential memory care provider, designate medical, legal, and financial powers of attorney, and complete a living will or advance care directive. If your parent has specific ideas for the distribution of assets, those should be spelled out in legal documents while he or she can still make those decisions.

The sooner you begin preparing for the cost of memory care, the better. Take your loved one to visit a financial planner to learn what types of care you can afford currently, and how to save for additional expenses effectively. Click here for more on preparing for the rising cost of memory care.  

In 2023, Chip Workman, director and senior wealth advisor at Mercer Advisors in Montgomery, Ohio, told us the importance of investigating care for older loved ones in advance. Workman said the worst time for older adults and their families to make a significant decision about their future is the day of, or days after, a health crisis: “That tends to be very expensive,” Workman said. “It’s unbelievably stressful – on the whole family, oftentimes. You don't know what you want, you don't know what's available.”

In many retirement communities, the level of care needed or the type of accommodation may not be available right away, or at all. Planning in advance can make a huge difference for everyone.

4. Provide for additional support or a possible move. 

Dementia symptoms may progress slowly at first, then rapidly worsen. It may not be safe for your parent to continue living alone, especially if their life partner is deceased or otherwise unable to provide daily care. If you or a sibling are willing to provide daily care, it may be time to move your parent into a family caregiver’s home or hire a care partner if that’s not an option.

Or, your parent might be interested in moving into a Continuing Care Retirement Community (CCRC) like Marjorie P. Lee, which can provide everything from independent living, assisted living, and memory support therapy to advanced nursing care.

At a CCRC, your parent can also socialize with other seniors and enjoy activities that enrich their lives. Meanwhile, you and your family will have peace of mind knowing that staff assist as needed.

For more information, download our Making Sense of Dementia guidebook below....

This blog includes previously posted material.