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Help shape the future of dementia home- and community-based services

Priscilla Novak
Priscilla NOVAK,
Division of Behavioral and Social Research (DBSR).

A quarter century ago, nursing homes were the most common type of care available for people living with Alzheimer’s disease and related dementias. Today, people living with dementia are much more likely to desire services such as home health care, respite care, and adult day care programs. Collectively, these options are known as home- and community-based services (HCBS).

HCBS support people living with dementia in multiple aspects of daily life, including personal care, medication management, meal preparation, social engagement, and cognitive stimulation. Many families and individuals prefer HCBS because these services offer care in a familiar setting while boosting independence, well-being, and overall quality of life. HCBS also emphasize personalized care to promote individual dignity and autonomy.

Collaboration, data tools, diversity

While public and scientific interest in HCBS has grown, gaps persist in understanding their cost, quality, and accessibility to underserved communities. To address this crucial but complex need, NIA is pleased to announce the Community Care Network for Dementia (CaN-D). With support via an NIA grant, CaN-D has the following goals:

  • Foster collaboration and knowledge-sharing: CaN-D aims to connect scientists and experts in the field to promote knowledge-sharing to drive breakthroughs and advancements in care.
  • Develop valuable data tools: CaN-D is committed to generating data tools to aid analysis of the structure, processes, and outcome measures of dementia HCBS. Visit the CaN-D Data Hub for tools that offer valuable insights into the impact of various approaches and that can help guide evidence-based decision-making.
  • Cultivate a more diverse researcher community: Recognizing the importance of supporting HCBS researchers representing diverse backgrounds and lived experiences, CaN-D aims to nurture mentorship programs and other resources to cultivate a more vibrant HCBS research community.

Share your thoughts online by Aug. 15

As CaN-D ramps up, its leaders are planning activities including mentorship programs, quarterly meetings, working groups, writing camps, an annual data workshop, and training seminars. To help shape this exciting new scientific venture and better understand the needs of the HCBS researcher community, please consider weighing in via the CaN-D expression of interest online form by Aug. 15. Individuals expressing interest will be invited to future CaN-D activities.

If you have questions, please email me or visit the CaN-D website. Together, we can make a significant and positive impact on the lives of people with dementia and their caregivers!


Submitted by Merill Whitehead on July 26, 2023

There needs to be a fixed and new approach to the various levels of dementia care, which is not always available in a nursing home reflecting a cost-prohibitive approach, i.e. presently I have a partner who had no choice but to enter a dementia nursing home wherein everyone residing there is at a level far beyond the early stage currently diagnosed by my partner.

In a short period, I have witnessed a dramatic decline in her behavior. Her cognitive response is "It's depressing to be with people of such level— get me out of here!" Sincerely I contend this is exacerbating the increased level she is experiencing.

Sorry to hear about your experience, but thank you for sharing it, as it highlights the need for better home- and community-based care options.

Submitted by The Care Hack on September 12, 2023

Really felt bad to hear about your experience, but thanks for sharing it. Your experience highlights the need for better home and community-based care options.

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