According to the Alzheimer’s Association, an estimated 5.8 million Americans aged 65 and older live with Alzheimer's dementia. Eighty percent of these individuals are age 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?
Today, let’s look at four critical first steps you and your family should take when an older loved one gets a diagnosis of Alzheimer’s or other 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 bleeds. They can also be caused by over-medication or drug interactions from regular prescription regimens. In such cases, treatment of the underlying causes might 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.
Often, though, dementia symptoms are idiopathic, meaning they have no discernible cause. Alzheimer’s is an idiopathic dementia variant. In such cases, supportive care is the only option.
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 home.
Regardless of where or from whom your parent receives memory support and nursing care, he or she will become more and more reliant on you to make well-informed medical decisions. To that end, you should begin learning as much as you can about dementia caregiving, as quickly as you can, so that you’ll be ready to make the right choices for your parent.
You might consider joining a dementia caregiver support group. There are several here in Cincinnati, including a group that, before the COVID-19 pandemic, met monthly at our sister campus, Deupree House. The Alzheimer’s Association hosts online support groups where participants can ask questions, get advice, and find support. Click here to browse upcoming virtual events.
Speaking of, you can also learn quite a bit online. However, be careful of your 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 and Dementia Inclusive Cincinnati.
Do not trust everything you read in commercial publications or on ad-supported websites like WebMD. Don’t trust others’ unsubstantiated social media posts or any sites that present dubiously-sourced medical opinions or unsupported assertions.
Most importantly, make sure you 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 his or her medical, legal, and financial powers of attorney, and complete a living will or advance care directive. If your parent has specific ideas for the dispensation of assets, those should be spelled out in legal documentation while he or she can still direct.
The sooner you can begin preparing for the cost of memory care, the better. If possible, 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 how to prepare for the rising cost of memory care.
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 already deceased or otherwise unable to provide daily care. If you or one of your siblings is 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 assisted independent living and memory support therapy to advanced round-the-clock nursing care.
At a CCRC, your parent can live independently as possible, for as long as possible, in their own comfortable living space. They can also socialize with other seniors and engage in enriching activities. All the while, you and your family will have peace of mind knowing that they are closely looked after.
Maybe your parent isn’t yet ready to move and is still capable of living safely at home with light supportive care from you or a home nurse. However, you’ll even want to encourage your parent to prepare for an eventual home sale because it will almost undoubtedly become necessary. If your mom or dad has time to think about a move and prepare accordingly, it may be a little easier for him or her to process when the time comes.
An Alzheimer’s diagnosis isn’t an end.
It’s a beginning.
A dementia diagnosis is the beginning of a challenging chapter in your parent’s life. But, by taking the four steps above to set affairs in order and arrange for proper memory care, you and your parents can alleviate some of the worries and focus on the remaining time you have together.
Author’s Note: This blog was originally published on March 9, 2017, but has been updated and republished with new information.