Young Onset Dementia. What You Need to Know.

When Beth called my CarePatrol office for help, the first thing she wanted me to know was that she was 40 years old, a working mom of 3 young kids, and she needed help NOW.  Crisis calls like this are not unique. Many 40 year old adult kids are caregivers for their parents.  They often reach a point of caregiver burnout, and need a quick solution to accommodate their loved ones care needs.  This call was different. Beth needed help for her 45 year old husband with dementia.

Dementia is a tragic illness.  Although associated with aging, it can strike at any age, and its impact can be devastating for both the patient and their loved ones.  The recent diagnosis of a 19 year old from China with Alzheimer’s is thought to be the youngest person ever found with the disease.  While I have never worked with someone that young, I have advocated for many adults in their 40’s and 50’s with various dementias including Alzheimer’s, frontotemporal and vascular. Receiving an early dementia diagnosis is not easy. In addition to the cognitive and physical challenges, younger people with dementia often have to give up work, causing financial hardship.  Many try to keep their condition at bay for as long as possible by following a healthy diet, exercising, reading and maintaining an active social life.

One of the most challenging aspects of dementia is the toll it takes on family and caregivers.  As the disease progresses, patients may become aggressive, agitated, confused, or lose their ability to communicate. This makes it difficult for caregivers to provide the support they need.

Many caregivers suffer from depression, anxiety and other health problems as a result. In Beth’s case, her former wrestler husband towered over her and she was afraid for herself and her small kids.  During a doctor visit, Jim had “launched” a nurse in the exam room.  They needed help immediately before he hurt himself or the people around him.

Young onset dementia is defined as when symptoms emerge before age 65.  It is estimated that almost 4 million people are living with an early onset of the disease. There is limited awareness of young onset dementia, and it is rare for a primary care doctor to see dementia in younger patients.  Since symptoms in younger people often do not involve memory loss, diagnoses can be delayed. This results in improper diagnosis, a lack of support, and difficulty finding care and housing options in a healthcare system that is geared towards older adults with these cognitive challenges.

In Jim’s case, symptoms first emerged as difficulty comprehending his children, struggling to express his thoughts, difficulty reading, and inability to make simple decisions.  Bruce Willis, who is 67, recently announced that he had frontotemporal dementia, which has similar early symptoms. There is currently no cure for dementia, and treatment options are limited.  There are medications that can help manage symptoms.

While Beth was concerned for her husband, she also had to consider the well-being of herself and her kids. Beth had reached out for help at a point when homecare was no longer an option.  We needed a proper diagnosis, medication management and a community solution for Jim ASAP. We put together a care plan for Jim that involved placement at an experienced memory care community that could deal with his behaviors and his young age while also giving him the independence he needed.

Transitions are difficult, and the first few weeks were a rough road for everyone involved.  With proper medication management, outbursts became less frequent.  The staff became skilled at redirecting Jim to avoid most of his agitation episodes. He made “TV friends” that ate ice cream and watched sports together.  As the family settled into a new routine, the kids began to enjoy visiting dad at his “hotel”, and the other residents looked forward to interacting with the kids and their dog.

Dementia is a degenerative disease, and we needed to confront that reality with the family. Beth told me that once we had a plan in place for Jim, and she was able to go back to being a wife instead of a caregiver, there was a peace in knowing that time was running out.  She said that this allowed her and the kids to value the little thing like Friday night movies in dad’s room and laughing while dad shared his slice of pizza with the dog and then put it back in his mouth.  The oldest daughter told me, “Dad’s life is like a candle.  It’s bright now, but it will be running out soon.”