Family Caregivers’ Unique Support Needs

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Partners in FTD Care
Winter 2019

An FTD diagnosis presents families with an overwhelming and ever-changing list of new priorities, limitations, and responsibilities. Research shows that caring for someone with FTD is more expensive and is associated with more health risks than other forms of dementia. (See “The Social and Economic Burden of Frontotemporal Degeneration,” James E. Galvin, et al., Neurology, October 2017.) FTD’s relatively young age of onset also presents families with unique struggles and difficult decisions.

Family caregivers commonly have feelings of guilt, sadness, loss, disbelief and grief, among others. And because of their diminished self-awareness, persons with anosognosia often resist limitations that caregivers must place on them to keep them safe, resulting in caregivers additionally feeling angry, frustrated and resentful. This complex mix of emotions increases the need for caregiver support. Finding others who understand how anosognosia affects caregiving is essential.

No one should walk this difficult road alone. FTD caregivers can find support through face-to-face, online or telephone support groups; on online message boards; or from individual counseling. Professionals can offer guidance around physical and financial safety, while healthcare professionals—occupational therapists, physical therapists, speech therapists, social workers, psychiatrists, nurse practitioners, etc.—can offer valuable insights into providing FTD care and maintaining caregiver health.

Persons with anosognosia are likely to resist a transition to residential care, even when they are absolutely necessary to keep them and others safe. Trying to wear down their resistance through reasoning will not be effective. Instead, encourage family caregivers to help the person with FTD to adjust to the changes involved in transitions.

Family caregivers need to feel supported when they are helping a loved one make a care transition. [For more information, see “Positive Approaches in Residential Facility Care.”] Other family members, however, may disagree that the person with FTD displays symptoms severe enough to necessitate additional care. For primary family caregivers, feeling judged and questioned in this way complicates their already devastating loss. A family meeting facilitated by a professional may allow for the family to come together to focus on the needs of both the person with FTD and their primary caregivers.

Family caregivers need emotional support, practical help and frequent breaks. Encourage caregivers to ask for help as precisely as possible. Are there specific chores that need to be taken care of, or appointments to be met? Simply asking others to spend time with the person with FTD can have a salutary effect on a caregiver’s health and wellbeing. Having friends and family check in regularly with caregivers reduces feelings of isolation and abandonment.

Encourage family caregivers to tell stories about the person with FTD before the onset of the disease. It is important for families to connect with those memories, and also helpful for hired care staff to know who the person was, how they lived and what they valued.

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