Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study

Betty S. Black PhD, Deirdre Johnston MB, Peter V. Rabins MD, MPH, Ann Morrison PhD, RN, Constantine Lyketsos MD, MHS, and Quincy M. Samus PhD, Journal of the American Geriatrics Society, Volume 61, Issue 12, pages 2087–2095, December 2013

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Researchers from Johns Hopkins conducted in-home assessments and surveys of more than 250 people with dementia living at home in Baltimore. They also interviewed about 250 family members and friends who provided care for these individuals.

Ninety-nine percent of patients and 97 percent of caregivers had one or more unmet need in areas such as:

  • safety,
  • health,
  • meaningful activities,
  • legal issues and estate planning,
  • assistance with activities of daily living,
  • and medication management.

More than 85% of caregivers had unmet needs for referrals to community resources (e.g., Alzheimer’s Association) and caregiver education on topics such as how dementia affects individuals and their loved ones, availability of community-based services, and caregiver skills.

45% of caregivers had unmet needs in the mental health domain, most of whom needed emotional support or respite care.

Note: The GEM Center teaches three classes in care Dementia 101 = Caring Effectively 12 hours and Qualified Dementia Provider workshop since 2001.