Addressing a Young-Onset Alzheimer’s Diagnosis as a Couple

Navigating a serious diagnosis with your partner is rife with difficulties. When it’s young-onset dementia, one of those difficulties can be finding resources and help that are age appropriate. A new study out of Massachusetts has some insight for couples struggling with this new reality in their lives.

Researchers from Massachusetts General Hospital conducted detailed interviews with 23 couples dealing with young-onset dementia. The goal was to better understand how these couples approached challenges related to the diagnosis and to use this information to create more resources for others in the same situation. The findings were published in JAMA Network Open.

Dr. Sarah Bannon, lead author and clinical psychologist, says, “Young-onset dementia strikes people while they’re still working, parenting or serving as caregivers for other family members. Despite the major life disruptions that accompany YOD, there are very few age-appropriate resources available for couples to participate in together. Our work shows the potential to develop resources that actively involve both partners and teach them skills to increase positive communication and mutual problem-solving.”

Bannon explained that this is the first study looking specifically at coping mechanisms for couples living with a YOD diagnosis, and it investigated both positive and negative approaches. Researchers found that soon after diagnosis, partners tended to avoid serious discussions about their feelings and emotions. While this was understandable, Bannon said the couples who were better adjusted took a “we” approach to the illness and addressed things as a team. A huge component of this teamwork was open and honest communication.

Dr. Ana Maria Vranceanu, senior author and director of the MGH Integrated Brain Health Clinical and Research Program, explains, “Our study suggested that when partners openly communicate about their challenging or painful emotions, they could work to understand each other’s perspectives. That mutual understanding was critical for couples maintaining their close relationship and adjusting to the ‘new normal’ as a team.”

Vranceanu says if both partners take this approach early on, before the symptoms make it difficult to have these discussions, it can help them better address difficult emotions as the disease progresses. It can also help them figure out how they can continue to connect meaningfully in the future.

Researchers plan to use their findings to beef up the sparse resources for couples living with YOD.

Bannon says, “Our long-term goal is to develop a program delivered early after diagnosis that helps couples collaboratively plan for the future and preserve their relationship strengths and quality of life.”

According to the Mayo Clinic, 5% to 6% of Alzheimer’s patients develop symptoms before the age of 65. It isn’t known why it hits some people at a younger age, though genes can play a role in some cases.