By James M. Ellison, M.D., M.P.H.

compelling new article in USA Today about early onset Alzheimer’s reminds us that dementia is not solely a disease of the elderly.  In fact, the first patient in whom Alzheimer described the disease — that would later bear his name —  was in her 50’s when symptoms became apparent.  Diagnosis shocks young dementia victims – USATODAY.com  Though age is the most powerful risk factor for dementia, some 5 percent of those afflicted by Alzheimer’s Disease, the most common form of dementia, develop symptoms before reaching 65. 

Is it gene linked?

Although some early onset Alzheimer’s disease cases are the result of an inherited gene linked with the disorder, many are not. The reasons for early onset in most patients are not well understood, though risk factors such as Down’s Syndrome or brain injuries are believed to contribute in a small number of individuals.

While dementia has tragic implications at any age, adults with younger onset often face irreversible disruption in career development and the support of a family.

Special needs

The Alzheimer’s Association has focused attention on the special needs of people with early onset dementia and their families and suggests a variety of steps that are well worth considering.  Continuing to participate in activities, old and new, is an important support for self-esteem.  It’s valuable  for people with dementia to do all they can as long as they can.  Additionally they may wish to take the time to think about choices that will need to be made later.

• Participating in a support group can help a person understand these steps and appreciate how others are dealing with them.
• A caregiver support group will help the cognitively impaired person’s support system accommodate changing and progressive needs while preserving as much autonomy as possible.
• A health care proxy or power of attorney should be executed to prepare for a time when decision-making is greatly impaired.
• Advance care plans should be considered so that the affected individual’s life will follow his or her preferences and values as closely as possible.

Quality of life

Perhaps the future holds the promise of stronger preventive measures and/or more effective biological therapies for dementia, but current medications have relatively limited beneficial effects for many of our patients.

Nonetheless, much can be done  now to improve the quality of life for affected patients and their caregivers by taking steps that will maximize the patients’ autonomy and support the vital connections that will continue with those who care for them as the disease follows its course.

Further information is available at:  http://www.mayoclinic.com/health/alzheimers/AZ00009

Photo: Yale Digital Commons

Copyright 2012  James M. Ellison/ All Rights Reserved