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13 Remote-Delivery Programs for Organizations That Support Dementia Caregivers

April 9, 2020

As the coronavirus outbreak spreads, friend and family caregivers of those living with dementia are navigating new challenges and stressors. Even as they continue managing their usual care-related responsibilities, many now receive less assistance from others, have access to fewer services, and in some cases must care for and supervise other dependent family members who must remain at home. Moreover, essential guidelines for physical distancing and transmission-risk reduction are upending many aspects of their daily lives and the lives of those they provide care to.

Subject to the same health and safety guidelines, the organizations that provide support and services to caregivers are scrambling to ensure that they can continue to help those who need assistance, while maintaining caregiver safety and well-being. Services that were previously delivered in-person are now paused, and the need for distance-friendly, high-quality programs is surging.

13 programs made for these times

To help organizations meet this unprecedented challenge, the experts at Benjamin Rose Institute on Aging and Family Caregiver Alliance have compiled a list of top dementia caregiving programs that can be delivered remotely (by telephone or online). These programs are vetted, proven and ready for implementation—complete with manuals, training and contact information of program developers.

The programs described below are some of the more than 40 evidence-based programs featured in Best Programs for Caregiving (bpc.caregiver.org), a free online database that allows organizations to identify, compare and adopt best-fit dementia caregiving programs for their clientele and community.

Best Programs for Caregiving is a product of the collaboration among three leading organizations in the field of aging and caregiving:  Benjamin Rose Institute on Aging, Center for Research & Education; Family Caregiver Alliance: National Center on Caregiving; and The Gerontological Society of America. Project funders are The John A. Hartford Foundation, Archstone Foundation and RRF Foundation for Aging.

Two program levels

Because different organizations have different resource availability (be that staffing, funding dollars or other resources) these 13 remote programs are grouped into 2 categories:

  • Level 1 programs: These are online, self-guided, or are delivered by a lay leader, thereby requiring limited time commitments from staff. Most involve relatively few hours of training and are available at low or no cost (7 of the 8 programs in this category are free).
  • Level 2 programs: These are designed for organizations seeking a more robust/specialized service that can be delivered by existing or newly hired staff members who become licensed and/or certified to deliver the program. These programs typically require more implementation and program support and delivery tools and resources, with some also eligible for reimbursement from public or private sources. Most have an annual and renewal fee.

Each program below has a brief description; click on the program link to learn full details, including program characteristics, research and outcomes, and implementation experience of other delivery sites. The links will open the program’s profile page on the Best Programs for Caregiving site.

After identifying programs of interest, organizations can contact the program developer (listed in the program profile) for more information or to answer questions. Please note that all programs are offered in English; additional languages are noted when available.

12 Remote-Delivery Programs for Dementia Caregiving

Level 1 Programs

Four in-person or telephone, group education and skills-training sessions for caregivers, focused on stress management, pleasant events, and strategies for reducing behavioral symptoms. In addition to English, program is offered in Spanish and Vietnamese.

Twelve telephone sessions for African-American caregivers of persons with dementia, focusing on skills-building, spiritual support, and improving self-care and the relationship with the person living with dementia.

Four in-person or telephone, individual education and skills-training sessions for caregivers of veterans living with dementia, focused on care planning, understanding the injury or illness of the person needing assistance, problem-solving, and stress management. In addition to English, program is offered in Spanish.

Ten telephone, individual education sessions for caregivers of persons living with dementia, focused on basics on dementia, behavioral symptoms, communication, planning for the future, and coping.

Six in-person or online, group education sessions for caregivers, focused on techniques for reducing stress, action planning, problem-solving, and decision-making. In addition to English, program is offered in Spanish, Chinese (Chinese, Mandarin and Cantonese).

Six in-person or online, group education and skills-training sessions for caregivers, focused on enhancing caregiving knowledge and skills, coping with stress, and encouraging persons living with dementia to participate in daily tasks and activities. In addition to English, program is offered in Spanish.

Video package for Hispanic/Latino caregivers of persons living with dementia, focused on coping with caregiving. Program is also offered in Spanish and can be self-administered.

Community teaching guide focused on providing quality care, caregiver coping and support, and community resources. Program is also offered in Spanish and can be self-administered.

Level 2 Programs

Six in-person, individual education and skills-training sessions for caregivers and persons living with dementia, focused on practical coping strategies and managing symptoms based on cognitive rehabilitation principles.

Ongoing telephone and email, individual care-coaching for caregivers and persons living with dementia and/or other chronic conditions, focused on accessing community and family resources, quality information, and emotional support.

Four in-person or telephone, individual education and skills-training sessions for caregivers, focused on care planning, understanding the injury or illness of the person needing care, problem-solving, and stress management. In addition to English, program is offered in Spanish.

Ongoing in-person or telephone, individual care-management and support program for caregivers of persons living with dementia and/or other chronic conditions, focused on assessment, care planning, and accessing community resources. In addition to English, program is offered in Spanish, Vietnamese, Chinese (Chinese, Mandarin and Cantonese), French and Korean.

Eight in-person or online, group education sessions for caregivers of persons living with dementia and/or other chronic conditions on mindfulness, meditation, and breath-focused mantra repetition, focused on stress management and resiliency. Program is also offered in Spanish and can be self-administered.

In addition to these 13 programs, several others within Best Programs for Caregiving will be launching remote-delivery options soon—sign up below to stay informed.

Best Programs for Caregiving contains more than 40 proven, vetted programs for organizations that support caregivers of those living with dementia. In addition to the remote-delivery programs highlighted here, the database includes a range of programs with multiple delivery options. Visitors can easily search for and compare programs that match their organization’s mission, resources and population needs. The database is continually updated with new programs and information—sign up to receive news and updates at bpc@caregiver.org.