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Advisory Council July 2017 Meeting Presentation: Living Alone With Dementia

Friday, July 28, 2017

Printer Friendly Version in PDF Format (6 PDF pages)


Living Alone With Dementia: Prevalence, Challenges and Strategies for Service Providers

Erin Long
Administration on Aging
Administration for Community Living

Prevalence and Severity

  • According to the National Health and Aging Trends Study, more than 30 percent of people with dementia lived alone in 2011.
  • Dementia symptoms combined with impairments in vision, hearing, gait and ability to communicate compound vulnerability and unsafe conditions for people living alone.
  • Progressive decline associated with dementia may go unnoticed until an emergency occurs.

Challenges for Service Providers

  • Identifying people who live alone
  • Assessing level of risk
  • Building trust
  • Supporting safety and respecting autonomy
  • Involving family and friends and expanding the person's network of support
  • Coordinating paid providers and formal support services
  • Assisting with transition to a new setting

ACL Dementia Program:Alzheimer's Disease Initiative-Specialized Supportive Services (ADI-SSS)

  • Program Target Gaps
    • Provision of effective supportive services to persons living alone with ADRD in the community;
    • Provision of effective care/supportive services to persons living with moderate to severe impairment from ADRD and their caregiver;
    • Improvement of the quality and effectiveness of programs and services dedicated to individuals aging with intellectual and developmental disabilities with ADRD or those at high risk of developing ADRD;
    • Delivery of behavioral symptom management training and expert consultation for family caregivers.
  • Community-Based Organizations only;
  • Designed to fill gaps in dementia-capable long-term services and supports;
  • Includes evidence-based/evidence informed intervention, direct service and match requirements.

Innovative Approaches for Providing Services

  • Identify and provide services to individuals with ADRD living alone in public housing units.
  • Pilot a sensor technology program to protect the health and safety of persons with ADRD who live alone.
  • Train "gatekeepers" such as law enforcement, Meals on Wheels assessors, banks, clergy and others who have regular contact to identify, understand safety issues and refer for assistance.
  • Teach money management skill building and train representative payees.
  • Develop an in-depth assessment and referral tool that enables social service providers to offer case management.
  • Form a community support network to allow people to donate time for services to people who live alone with dementia

Texas Identification, Referral and Case Management

  • Identification and Referral Protocols for service providers, point of entry entities, and case management services includes dementia screening and assessment tools along with a network of local resources.
  • Case Management: Dementia-specific Case Manager (DSCM) developed protocols and local case management organizations were trained to identify, assess, and respond to the needs of individuals living alone with or at risk of ADRD.

Maine Community Support Program

Target: Living alone with dementia w/o adequate support

  • Pilot in one area -York County
  • Expanded MOW assessment for case finding
  • Case mix: 75% "complex"
  • Professional dementia specialists serving small case loads (1.6 FTE staff)
  • Average length of involvement: 8.8 months

California Care Circle Approach

  • Dementia Safety Net Algorithm tool assesses unmet Diagnostic, Medical, Financial/Legal, Daily Living, Safety, Quality of Life, Support System, or Technology Needs
  • Professionals identify and develop a "care circle" of friends, neighbors, and others to help people with dementia who live alone.
  • Resource Guide, titled Alone, But Not Forgotten: Supporting those living alone with memory loss addresses diagnosis, partnering with a medical team, legal and financial planning, and potential safety issues.

Available Resources


Erin Long, MSW
Office of Supportive and Caregiver Services
Administration on Aging/Administration for Community Living
U.S. Department of Health and Human Services

July 28, 2017 -- Advisory Council Meeting #25

The meeting was held on Friday, January 26, 2018, in Washington, DC. The Research Subcommittee took charge of this meeting's theme, focusing on the process from targets to treatments. The Council heard speakers on the preclinical pipeline, the clinical trial pipeline, and the industry perspective. The meeting also included discussion of a driver diagram to guide the Council's future work, updates and a report from the October Care Summit, and federal workgroup updates. Material available from this meeting is listed below and is also available at

Comments and questions, or alerts to broken links, should be sent to


General Information


Presentation Slides



  • Welcome thru Clinical Care -- [Video]

  • LTSS Research -- [Video]

  • Public Comments thru Federal Workgroup Updates -- [Video]

  • Recommendations thru Adjourn -- [Video]