SELF-CARE

SUPPORT

Caring for a person who has been diagnosed with Frontotemporal degeneration (FTD) can be physically exhausting as well as emotionally stressful because of the extreme personality changes and language difficulties that can accompany these disorders.  Building a support system is necessary for caregivers to enhance their coping strategies. Talking to other caregivers can be helpful in terms of sharing experiences, identifying resources, and problem solving.  Having the opportunity to speak with others living with a similar experience can also be therapeutic. Caregiver support groups are a good source of education about FTD spectrum disorders and vital social connection. There are several options for support groups including face-to-face, online and telephone support groups. For a list of support groups visit our Resources page.

Caring for a loved one with FTD may be different than caring for one with Alzheimer’s Disease or other dementias.  While memory loss is the primary feature of Alzeihmer’s Disease, caregivers of those with FTD often have to cope with unpredictable behavior, lack of empathy and caring from their loved one, lack of available resources and may have to educate the friends and family who are unfamiliar with FTD.

Depression, anxiety, social isolation, fatigue, irritability and grief are signs of caregiver stress. It is important to pay attention to these feelings and seek necessary treatment.

Calling on the help of others can be difficult for caregivers. Often caregivers are hesitant to ask for help. Getting support from others will be invaluable. Create a circle of support or a list of friends, family and colleagues who you can call on for help. Start by asking small requests.  Reaching out will be difficult at first, but the more you ask, the easier it will become.

RESPITE

Caring for someone who has Frontotemporal degeneration can be physically and emotionally demanding.  Respite care is the short-term provision of care that is designed to give relief to caregivers. This can be done in the home, daycare facility or residential facility setting. Respite care may be done by volunteers or paid health aides and other trained staff. Many caregivers use informal respite such as help from family or friends. Others seek out professional respite services offered by nursing organizations such as short term stays in nursing homes or assisted living facilities.