Imagine living in a different city than your elderly parents. You receive a call from your mom after learning that your dad has been diagnosed with dementia. Your mom explains that she found a neurologist to evaluate your dad regularly, but she doesn’t know how to find other services to assist in caring for your dad and provide her with needed support. You assure her there must be supports and services near them. From afar you offer to help her navigate the situation. After weeks of research, you realize you may have been wrong. You find some services and supports for people with dementia and their caregivers, but the organizations offering support do not work together to coordinate services and each one is missing something your parents need like transportation or caregiver education. You and your parents are left wondering what to do next, who to turn to, and how you ever will be able to manage the progressive nature of dementia.
It’s well reported that cases of dementia are expected to grow tremendously in future years. The World Health Organization reports that approximately 50 million people have dementia worldwide, and that number is expected to increase to 82 million people by 2030. The effects of dementia are many and impact both the life of the person with dementia and their family members and friends, who often serve as unpaid caregivers.
To address the many needs of people with dementia, more than medical care is needed. People with dementia often need help with daily household tasks and managing their finances and can require support for behavioral symptoms. However, providers have not been able to address all the needs of people with dementia, and gaps exist in terms of appropriate services for people with dementia and their caregivers in many communities. (Lin & Lewis, 2015). It is essential that we take necessary steps to prepare for the upsurge in dementia and the needs of both people with dementia and their caregivers.
The Administration on Aging (AoA) provides grants to state and local agencies and community-based organizations to build and expand their services for people with dementia and their caregivers, which is termed “dementia capability.” Three key aspects of developing dementia-capable systems include: (1) increasing dementia knowledge and skills among staff, volunteers, and community members; (2) identifying and addressing service gaps, particularly where more specialized services are needed; and (3) ensuring that long-term services and supports fulfill a person’s needs and improve their quality of life.
It would be challenging for one organization to develop a dementia capable system without the input and assistance from other entities in their community. To help address this challenge, AoA grantees collaborate with partner organizations to determine the gaps in dementia services and supports within their specific communities and focus their efforts in those areas.
One essential step in growing dementia capability is to develop methods to locate community members with dementia so they can be connected with appropriate services and supports. Various strategies have been used by AoA grantees to do so, such as training staff, developing protocols, or establishing partnerships. Some examples of these strategies used by AoA grant programs follow. Minnesota’s Aging and Disability Resource Center adopted a protocol to help identify people with dementia and caregivers of people living with dementia when they initially call their Senior LinkAge Line®. Training on dementia identification is now part of the required training for all new Senior LinkAge Line® staff including online periodic updates to reinforce learning. The United Way in Tarrant County, Texas, is working with Meals on Wheels of Tarrant County, Inc. to identify and provide services to persons living alone with dementia, especially those who have diabetes. The Meals on Wheels case managers assess clients for dementia and, when appropriate, refer them to dementia options counseling in their Aging and Disability Resource Center.
To improve their dementia capability, some AoA grant programs focused on training dementia care providers to recognize, understand, and meet needs of people with dementia and their caregivers. Alzheimer’s Los Angeles developed the Dementia Care Management Toolkit, a curriculum that can be used with health plans and health care organizations to train dementia care managers and dementia care specialists. The curriculum is available online and contains a health risk assessment, tool for identifying informal or family caregivers, best practice care plans, and caregiver tip sheets. A separate online training program for primary care providers was developed by the Virginia Department of Aging and Rehabilitation Services and is available on the AlzPossible.org website. Their microlearning modules are each 5-7 minutes in length allowing the learner to learn and apply very specific knowledge and skills quickly. Some training topics include demystifying dementia, sharing the diagnosis, communication, and medication management.
These examples of AoA grant programs that worked to better identify people with dementia and train the dementia workforce are just a sampling of the many programs across the country working to create and sustain dementia capable systems. Additional information on building dementia capable systems and AoA dementia grant program examples focusing on these and other areas of dementia capability can be found in the report, Dementia Capable States and Communities: Lessons Learned from Administration on Aging Grantees prepared by staff at RTI International for the Administration for Community Living. The report can be referred to by those working to build their dementia capable systems to ensure they are incorporating as many aspects of dementia capability as possible, and the examples provided within the report can be adapted to best fit the unique needs of organizations and communities.