Skip to main content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

HHS Logo Eagle IconU.S. Department of Health and Human Services
napa

Advisory Council April 2018 Meeting Presentation: Quality Care from the People Living with Dementia Perspective

Friday, April 27, 2018

Printer Friendly Version in PDF Format (3 PDF page)

 

Quality Care from the Perspectives of People Living with Dementia

Cynthia Huling Hummel, B.S., M.Div., D.Min.
NAPA Council Member
National Alzheimer's Association Early-Stage Advisor (2015)

Photograph of Cynthia Huling Hummel with 2 unknown men.

 

A Letter to Our Caregivers: Quality Care from the Perspective of Individuals Living with Dementia

Presented by Cynthia Huling Hummel to the NAPA Advisory Committee April 27, 2018

Dear Caregivers,

Imagine experiencing dramatic changes in your memory and thinking that disrupt your everyday functioning. Then imagine trying to cover-up or cope with these challenges as the fear and isolation of the unknown continues to grow. For many of us, access to an early and accurate diagnosis helped validate our concerns and provided the opportunity to develop strategies to live with dementia. Coupled with education and resources immediately after diagnosis, early detection and diagnosis can help build the foundation for quality person-centered care.

Alzheimer's disease affects each person differently; therefore, our experiences living with dementia will be different. Professional caregivers should take time to find out more about us and our history. Person-centered care means engaging in a dialogue WITH me, not just AT me. We want to tell you about our hopes, our dreams, and our lives. When you know us, we can be partners in putting a quality person-centered care plan in place. If we are not able to provide this information, please seek the input from others who might know us: our family members, friends and partners. Accept us as we are and practice patience. Individuals living with dementia need support, but don't be too quick to jump in and take over. Let us do as much as we can for as long as we can.

Quality care is about meeting individual needs and preferences. As our ability to communicate changes, we are asking you to be detectives and be flexible to adjust care approaches to meet our needs and preferences. Similarly, be mindful of creating an environment that reflects our characteristics, personality and preferences. Please practice tolerance of our changing abilities, while helping us focus on our strengths so that we can maintain a sense of autonomy for as long as possible.

Opportunities for meaningful connection should be a consideration of quality care. We want and need varied and available activities that have meaning and purpose. We are all different, and different is good. It is the connection to others at every stage of the disease that can make a difference in our overall sense of wellbeing.

We need an effective care team that is working together to personalize our care in response to our unique and changing medical, social and emotional needs. And please make sure that we are included in the discussion. Take time to listen to US and coordinate with other members of our care team. Act as a partner and advocate.

Another key to effective person-centered care is trained staff. Provide educational opportunities for staff to learn about best practices and how to respond to our needs as they change. We want and need staff to treat us as individuals; because we are all different. We want and need to have confidence in the care providers' ability to care for us because our sense of well-being depends on it. We want and need your expertise on person-centered approaches to our care-that are both pharmacological and non-pharmacological. Provide us and our families with the pros and cons of different treatment options and interventions so that we are informed and empowered. We are mindful that some medications for 2 example, have unpleasant side effects or may not be efficacious after a certain period of time. These are important considerations in making person-centered treatment decisions. Let's make them together.

There will come a time when we may not always accept or understand the care you will provide to us. Know that we appreciate the work you will do every day to help maintain our quality of life, our sense of purpose and personhood. YOU have a unique opportunity to ensure person-centered care is imbedded in the culture of your organization, and the Alzheimer's Association has given you a roadmap on how to do it well. Your efforts will give our families the support and guidance they will need as they navigate this uncertain journey with us and help us to live well with dementia throughout every stage of the disease.

Thank you for all you do and for your commitment to quality person-centered dementia care.

Respectfully,

Alzheimer's Association National Early-Stage Advisors

For more information, please read A Guide to Quality Care from the Perspectives of People Living with Dementia [https://alz.org/dementia-care-practice-recommendations/downloads/qualitycare_plwd.pdf] or visit https://www.alz.org/dementia-care-practice-recommendations/.

April 27, 2018 -- Advisory Council Meeting #28

The meeting was held on Friday, April 27, 2018, in Washington, DC. During the meeting, the Clinical Care Subcommittee took charge of the theme, focusing on advancing consensus on dementia care elements to guide new outcomes measurement. The Council heard speakers in two sessions, one focused on developing consensus about dementia care elements, and the second on models that are informing outcomes measurement. The meeting also included updates on work from the previous meetings, a presentation on the final report from the October 2017 Care Summit, and federal workgroup updates. Material available from this meeting is listed below or at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Apr2018.

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.

 

General Information

 

Handouts

  • Main Summit Recommendations -- [HTML Version] [PDF Version]

  • National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers: Report to the National Advisory Council on Alzheimer's Research, Care, and Services -- [HTML Version] [PDF Version]

 

Presentation Slides

 

Videos

  • Introductions and Updates -- [Video]

  • Clinical Care Agenda Session 1 -- [Video]

  • Public Comments -- [Video]

  • Clinical Care Agenda Session 2 -- [Video]

  • Care Summit Final Report -- [Video]

  • MEETING WRAP-UP: Final Report to the NAPA Advisory Council -- [Video]