In the fall of 2011, one month shy of his 59th birthday, Steve Johanson was diagnosed with early onset Alzheimer’s disease. Faced with “his worst nightmare,” Steve, a construction project manager from Watertown, Massachusetts, and his wife Judy, a family daycare provider, decided to face the disease together. For the next six years, the couple sought advice from doctors, visited museums, took gardening classes and surrounded themselves with family. But by the spring of 2017, things had started to unravel.
“The hallucinations that came with the later stages of the disease caused Steve to react in a defensive manner,” Judy says. While she did her best to make Steve comfortable, she admits his deteriorating condition often left her feeling isolated and overwhelmed. “I didn’t know where to turn.”
More than 16 million Americans are caring for a friend or family member with Alzheimer’s — often at great personal and financial cost to themselves. Studies have shown that dementia caregivers regularly suffer disruptions at work, reductions in household income and savings, and develop health problems of their own. Facing burnout, many look for help from hospitals that are often unequipped to deal with Alzheimer’s patients.
The Dementia Caregiver Support Program (DCSP) was founded by Massachusetts General Hospital’s Division of Palliative Care & Geriatric Medicine to reduce avoidable hospitalizations and improve the quality of life for patients and caregivers alike.