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Alzheimer's
Foundation of America

Role Changes in Young-Onset Alzheimer’s

Alzheimer’s disease can have an impact on the entire family. New tasks and responsibilities arise, and relationships may change, often without a say, due to the individual living with dementia related illness’ evolving needs. This can be increasingly stressful for the family system. In many families, each member performs certain roles that help keep the family unit functioning. When someone—particularly a spouse—becomes ill, roles and expectations may need to shift.

An individual with young-onset dementia and their spouse may experience the following changes:

  • Shift in family roles and responsibilities
  • Change in professional responsibilities
  • Multiple levels of loss (i.e. health and functioning, self-esteem, communication, and future)
  • Increased feelings of ambivalence
  • Financial concerns
  • Working with children and teenagers to cope with illness
  • Providing increased assistance to help their spouse remain active and engaged
  • Consideration of multi-generational care

A diagnosis of young-onset Alzheimer’s disease can trigger a wide range of emotions, including anger, disbelief, confusion and frustration, for both the individual living with the illness and their spouse. It is important to find ways to cope with the feelings and emotions that arise, to allow space to be proactive, and take the necessary steps to put plans in place regarding care. Learning strategies to assist with coping, as well as understanding available resources, can help improve emotional well-being.

Here are some examples of coping strategies:

  • Learn about the disease (i.e. books, meetings with doctor)
  • Connect with supportive services (i.e. counseling, pastoral care, school counselors, support groups).
  • Allow yourself space to grieve
  • Coordinate necessary care for your spouse and family (i.e. financial planning, legal planning, care team)
  • Ask for help
  • Maintain open communication with spouse and family
  • Remain flexible
  • Recognize the positive that remains
  • Seek out opportunities to enjoy each other’s company
  • Utilize problem solving skills and explore solutions