Managing Frontotemporal Dementia

Living with or Managing Frontotemporal Dementia

Coping with frontotemporal dementia can be frightening, frustrating, and embarrassing for both the person with the disease and family members. Since some symptoms of frontotemporal dementia can’t be controlled, family members shouldn't take their loved one’s behaviors personally. Families need to maintain their own well-being while ensuring that their loved one is treated with dignity and respect.

Caregivers should learn all they can about frontotemporal dementia and assemble a team of experts to help the family meet the medical, financial, and emotional challenges they are facing.

It’s important to find a doctor knowledgeable about frontotemporal dementia. Other health care specialists who may play a role on the team are home-care nurses, neuropsychologists, genetic counselors, and speech and language, physical, and occupational therapists. Social workers can help patients and caregivers find community resources, such as medical supplies and equipment, nursing care, support groups, respite care, and financial assistance.

Attorneys and financial advisors can help families prepare for the later stages of frontotemporal dementia. Advanced planning will help smooth future transitions for the person and family members and may allow the person to participate in the decision-making process.