An estimated one in three American seniors are diagnosed with dementia or Alzheimer’s disease at some point in their lives. 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 for you. What should you do? What steps should you take to make sure that your parent has the care and support he or she needs?
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, or 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 to 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, he or she will need caregiving from a family member, home nursing providers or a 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 the group that meets monthly here at Marjorie P. Lee. It may be helpful to network with other caregivers and receive mutual support from them.
Your parent’s doctor should be able to provide you with introductory information or bridge you over to community-based learning and services. The Greater Cincinnati Chapter of the Alzheimer’s Association and the Council on Aging can also connect you with learning opportunities, support groups and resources.
You can also learn quite a bit online, but be careful of your sources. Stick to information from reputable medical provider organizations, the National Institutes for Health, the Centers for Disease Control and Prevention (CDC) and well-regarded dementia advocacy or dementia support organizations.
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 you act 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 him or her to develop a care plan.
Now is the time for your parent to choose a residential retirement care provider, to designate his or her medical, legal and financial powers of attorney, and to 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.
4. Provide for additional support or 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 his or her 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), 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 socialize with other seniors and live as independently as possible, for as long as possible, engaged in enriching activities, and you and your family will have peace of mind knowing that he or she is being 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 still 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 to for him or her to emotionally process when the time comes.
A dementia or Alzheimer’s diagnosis isn’t an end.
It’s a beginning.
To be sure, it’s the beginning to 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 parent can alleviate some of the worry and focus on the remaining time you have together.