Alicia Seaver is a Certified Memory Impairment Specialist and Vice President of Memory Care Operations at Bridges® by EPOCH.
No one expects to receive a dementia diagnosis, especially not middle-aged adults who are still busy with their careers, families and other commitments. Sadly, dementia doesn’t discriminate. Though most of the more than five million Americans living with Alzheimer’s or another form of dementia are seniors, five percent of these Americans are diagnosed before age 65. This is referred to as early-onset dementia.
Grappling with the challenges of a dementia diagnosis is difficult at any age, but it’s particularly devastating for those who still have things they plan to accomplish in life. An early-onset diagnosis often leaves people questioning how they will they will continue to lead a fulfilling life, as well as how they will care for their families physically, emotionally and financially. As a spouse, family member or friend to someone who’s recently received an early-onset diagnosis, it’s important to offer as much support as possible, and to begin discussing expectations and future plans as soon as possible. Below are tips for moving forward following an early-onset diagnosis.
Communicate openly and honestly. This is no doubt a difficult time for you as well as your loved one, especially if you’re raising a family together. Shortly after the diagnosis, discuss when and how you plan to share the news with your children. It’s also important to discuss how familial roles may change moving forward. Understand that your loved one may grieve these anticipated changes, and know that it’s okay to commiserate with them. Confronting the onslaught of emotions that follows a diagnosis is the first step in moving forward.
Learn what your loved one needs. As dementia progresses, your loved one may need assistance with everyday tasks and help remembering appointments, people’s names and other details. This can be particularly frustrating for independent adults who are used to doing things on their own. While you should be willing to offer help where needed, don’t assume your loved one is incapable. Establish a cue or phrase your loved one can use to indicate that your help is needed, and schedule regular check-ins to assess how they’re doing and where you can step in.
Plan for the future. It may be difficult for your loved one to admit their future is now uncertain, but it’s important to plan for upcoming changes. A decline in memory and other cognitive abilities may affect their ability to work. Anticipate this possibility and help them explore other options such as an early retirement or reliance on an employee assistance program. Your loved one should also consider their healthcare coverage and how they can continue coverage it if they’re no longer employed; under the Consolidated Omnibus Budget Reconciliation Act of 1985, they may be able to keep their healthcare coverage for a set amount of time after leaving their employer. You can also help them explore Social Security, Medicare and Medicare benefits. This is also a good time for your loved one to seek the advice of a financial and long-term care planner, and you should offer to schedule or accompany them to these meetings if needed.
Seek counsel. Consider seeking outside counsel as you and your loved one navigate this difficult time. The Alzheimer’s Association offers support groups for those living with memory loss as well as their caregivers, and Bridges by EPOCH communities host a variety of caregiver support groups. You might contact your local senior center to see if they offer support groups and educational resources, too. Couples and families may also wish to seek private counseling in order to address issues of sexual intimacy, changing family roles, future plans and other challenges.
Stay involved. Following a dementia diagnosis, many people have a tendency to withdraw from the social aspects of their lives. This is an understandable response, as the diagnosis can create feelings of fear, shame and embarrassment, especially for those with early-onset dementia. That said, withdrawal often exacerbates those feelings and causes people living with dementia to feel increasingly isolated, whereas staying involved often leads to a happier, more fulfilling life. Encourage your loved one to stay active with friends and within their community. Look into volunteer opportunities the two of you could do together, or see if there’s a community organization or meetup group they could join.
An early-onset dementia diagnosis is difficult for everyone involved. Your loved one may be grieving and struggling to cope, and it’s normal for you to have similar emotions as well. Communicate your feelings to one another and work to get through this trying time together. Know that navigating the challenge together will help strengthen you relationship, and remember to continue focusing on what brings you both joy even as you plan for future changes.
If there is a topic you would like Alicia to discuss, please send suggestions to [email protected].