Caring for the caregiver in dementia

Tools are available to facilitate caregiver assessment. For example, the Zarit Burden Interview is a 22-item self-report measure that can be given to the caregiver²¹; shorter versions (4 and 12 items) are also available.²² Another resource available for caregiver assessment guidance is a toolkit developed by the Family Caregiver Alliance.²⁰

Continually assess for changing needs

As the condition of the individual with dementia progresses, it will be important to reassess the caregiver, as stressors and needs will change over the course of the caregiving relationship. Support should be adapted ­accordingly.

In the early stage of dementia, caregivers may need information on disease progression and dementia care planning, ways to navigate the health care system, financial planning, and useful resources. Caregivers also may need emotional support to help them adapt to the role of caregiver, deal with denial, and manage their stress.^23,24

With dementia progression, caregivers may need support related to increased decision-making responsibility, managing challenging behaviors, assisting with ADLs and IADLs, and identifying opportunities to meet personal social and well-being needs. They also may need support to accept the changes they are seeing in the individual with dementia and the shifts they are experiencing in their relationship with him or her.^23,25

In late-stage dementia, caregiver needs tend to shift to determining the need for long-term care placement vs staying at home, end-of-life planning, loneliness, and anticipatory grief.^23,26 Support with managing changing and accumulating stress typically remains a primary need throughout the progression of dementia.²⁷

Continue to: Specific populations have distinct needs