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Headlines in this issue:

People Living with Early-stage Alzheimer’s Offer Insights on Their Care

A recently released report by the Alzheimer’s Association examines quality care through the eyes of people living with the disease. A Guide to Quality Care from the Perspectives of People Living with Dementia summarizes survey findings and interviews from individuals living in the early stage of Alzheimer’s or other dementias. It offers insights into how those most affected by the disease view quality care and what they want from care providers and caregivers during their difficult journey.

The new guide synthesizes feedback from survey respondents, as well as additional information obtained from individuals living with dementia throughout the 10 years of the Alzheimer’s Association Early-Stage Initiative. Important care considerations identified by those living with early-stage Alzheimer’s, included:

  • Encourage early detection and diagnosis.
  • Share appropriate information and education.
  • Maximize independence.
  • Personalize care to meet individual needs and preferences.
  • Adjust care approaches to reflect day-to-day needs and abilities.

A complete list of these care priorities can be found in the report.

The new report is a companion piece to the recently released Alzheimer’s Association 2018 Dementia Care Practice Recommendations which outline 56 recommendation’s across 10 content areas for professional care providers who work with individuals living with dementia and their families in long-term and community-based care settings. They were developed by 27 dementia care experts convened by the Alzheimer’s Association and are based on a comprehensive review of current evidence, best practice, and expert opinion. The recommendations seek to better define quality care across all care settings, and throughout the disease course.

  • Expert Interview: Sam Fazio, Ph.D., Director of Quality Care and Psychosocial Research, Alzheimer’s Association.

RAISE Family Caregivers Act – Why it’s Important for Alzheimer’s Caregivers

The RAISE (Recognize, Assist, Include, Support, and Engage) Family Care Act signed into law last month marks a milestone victory for the more than 5 million people living with Alzheimer’s and their 15 million unpaid caregivers. The new law requires HHS to develop, maintain, and update an integrated national strategy to support family caregivers. This strategy will help identify actions that communities, health providers, employers and others can take to support family caregivers, including:

  • Promoting greater adoption of person-centered care and family-centered care in health settings and long-term care settings
  • Training for family caregivers
  • Respite options for family caregivers
  • Ways to increase financial security for family caregivers
  • Workplace policies to help family caregivers keep working
  • Assessing federal programs around family caregiving

The need for such strategies to assist Alzheimer’s caregivers is critical. Consider these facts:

  • Nearly 75 percent of dementia caregivers are somewhat or very concerned about maintaining their own health since becoming a caregiver.
  • Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high.
  • As many as 40 percent of family caregivers of people with Alzheimer’s and other dementias report symptoms of depression.
  • The physical and emotional impact of caregiving on Alzheimer’s and dementia caregivers resulted in an estimated $10.9 billion in increased caregiver health costs in 2016.
  • Despite these higher costs, 16 percent of dementia caregivers say they needed to see a doctor in the past year but could not afford it.

The RAISE Family Caregivers Act also directs HHS to create a Family Caregiving Advisory Council, similar to the National Plan to Address Alzheimer’s Disease Advisory Council. Both the advisory council and The RAISE Family Caregivers Act were closely modeled after the National Alzheimer’s Project Act. The Alzheimer’s Association and AIM have been strong advocates for the RAISE Family Caregivers Act since its introduction.

  • Expert Interview: The Alzheimer’s has policy experts to discuss the importance of RAISE as well as family caregivers to share their insights into the physical, financial and emotional burdens of caregiving.

Tips to Navigate Winter for Families Confronted by Alzheimer’s

Winter can bring about additional challenges for people living with Alzheimer’s and their caregivers. Snow, extreme temperatures and early darkness are just of the season-related changes caregivers need to navigate when caring for someone living with Alzheimer’s.

“Cold weather, snow and ice are a potentially dangerous mix for people living with Alzheimer’s” said Monica Moreno, Senior Director, Care and Support, Alzheimer’s Association. “Alzheimer’s often affects a person’s balance or decision-making, so caregivers need to be extra diligent about protecting their loved ones from falls or exposure to cold temperatures.”

The Alzheimer’s Association offers these winter safety tips for those living with Alzheimer’s:

  • Be prepared. Check weather conditions regularly and have emergency plans in place.
  • Bundle up. People living with Alzheimer’s can be at greater risk for hyperthermia because they do not dress appropriately for conditions or cannot communicate weather-related discomfort. Make sure your loved one is dressed and prepared for winter weather conditions.
  • Avoid slips and falls. People living with Alzheimer’s may experience problems with vision, perception and balance. Assume all surfaces are slick; assist the person by taking smaller steps and slowing down, so they can match gait and speed to a safer level.
  • Make daylight last longer. Shorter days during winter months can also increase the risk of “sundowning.” Monitor closely for agitation or restlessness as day transitions into night. Make daylight last by turning on indoor lights earlier, opening curtains or installing motion detector lights.
  • Prevent wandering. Wandering is a common challenge facing caregivers and can be extremely dangerous in colder conditions Enroll in the MedicAlert® + Alzheimer's Association Safe Return® - a 24-hour nationwide emergency response service for individuals with Alzheimer's or other dementias who wander or have a medical emergency.
  • Ask for help with snow/ice removal, grocery shopping or other errands.

Additional safety tips for Alzheimer’s caregivers can be found by visiting

  • Expert Interview: Monica Moreno, Senior Director, Care and Support, Alzheimer's Association.

Media Contact
Mike Lynch
Media phone line: 312-335-4078