Early-Onset Dementia: How to Plan for the Future

“Dementia.” The word conjures images of the elderly: A parent, a grandparent, an older neighbor. Most people view dementia as an “old person’s” disease, and there’s some truth to that perception: The Alzheimer’s Association estimates that in America, one in nine people over 65 has dementia. 

But early-onset dementia, which targets people in their 40s, 50s, and occasionally even in their 30s, affects 200,000 Americans. It’s uncommon, but it happens. If you or someone you love receives the diagnosis, the best way to fight back is to be prepared. Here are some strategies. 

COMMUNICATE 

Dementia is frightening—for the people who live with it and the people who love them—but the fear can be stabilized by talking honestly and openly about the diagnosis and future care.   

• Assemble a team: A care team can help the person with dementia come to terms with their diagnosis. Seek out support groups. Find a therapist. Reach out to family and friends for emotional support. 
• Create a help cue: At first, while adjusting to the situation, the care team may offer too much support, which can feel infantilizing, invasive, or unnecessary. One strategy is to create a cue—a word or small gesture to signal that help is welcome. A help cue can reassure the support team that it’s okay to step in. This sign of consent is particularly useful in public, where the person with dementia may feel self-conscious. 
• Assess the situation: It can be hard to know how much support to offer someone with early-onset dementia. They may be perfectly capable of driving, bathing, or any other number of everyday tasks. But if they’re not, the result could be unpleasant at best, tragic at worst. Assessing safety risks and activities that cause stress and frustration is vital. If you’re in the assessor’s role, work to stay positive, non-judgmental, and straightforward. If you’re the person with dementia, try to be honest with others about what you need. Create a list of what can and can’t be done alone and start asking members of the support group how they can pitch in. From both perspectives, it’s a good idea to check in periodically to ensure the right level of support is being offered. 
  

MAINTAIN HEALTH AND WELLNESS

There’s no cure for dementia, but it’s possible to live with the disease and maintain a high quality of life. But quality of life starts with quality of physical and emotional health. 

• Manage stress: Ironically, the devastation of a dementia diagnosis may be even more heightened when it’s detected early. Early-onset dementia is uncommon enough that it’s often hard to get an accurate diagnosis. Lack of clarity can contribute to stress and frustration already exacerbated by fear, making symptoms worse. Consider meditation or yoga to combat stress. While it’s still unclear if these practices have a direct effect on cognitive function, they keep the brain engaged and improve well-being, which help reduce anxiety and depression. 
• Stay healthy: It will also help to keep the body conditioned. Think nutrition and exercise in addition to the stress management techniques above. Lowering or eliminating the intake of memory-affecting substances like alcohol or drugs is also wise. 
• Consider medication: There are a few medications that may delay memory loss and are approved for various stages of dementia. Speak with a doctor to find out what’s available and appropriate.  

PLAN 

Dementia is unpredictable. It’s impossible to know how fast it will progress in an individual, which means you also can’t predict the medical care required, or what will become of jobs, relationships, travel plans, etc. But you can take care of some of life’s details.

• Make a list: Studies show that creating a to-do list or plan increases productivity and reduces worry. An early-onset dementia diagnosis undoubtedly feels overwhelming—putting a plan on paper may help the future feel more manageable. 
• Act soon: While early-onset dementia may begin with symptoms like losing track of dates, forgetting things, or repeatedly asking the same question, it can quickly progress to a more serious form of the disease. Eventual symptoms may include trouble speaking or swallowing, hallucinations, and severe behavior changes. The best way to prepare for the unknown is to make a plan as early as possible, before the dementia progresses and the person with early-onset dementia simply can’t plan any longer. Now is the time to start thinking about finances, job, health insurance, getting documents in order, assigning power of attorney, and every other aspect of life that may be impacted. 

Remember, quality of life with dementia is possible. But the earlier you gather a support team, create or solidify a healthy lifestyle, and make a plan, the better off you or your loved one with early-onset dementia will be.  

For more about the causes and symptoms of early-onset dementia visit the Alzheimer’s Association. To discuss the industry’s best in-home care with dementia care specialists, reach out to Tender Rose.