Comprehensive Dementia Care Programs: Caregivers Are an Essential Part of the Equation
If you are a caregiver for a family member with dementia, you may be all too familiar with the following feelings:
Uncertainty about where to turn for community-based programs
Not knowing how to handle issues related to dementia, like medications, challenging behaviors, medications, or advanced care planning
Sensing that few, if any, of your family member's healthcare providers know how to help you, as the caregiver
All of these factors can lead to high levels of stress, as well as the feeling that you are alone. The reality, however, is that your experience is all too common. The Alzheimer's Association's 2019 Alzheimer's Disease Facts and Figures highlighted that unpaid caregivers provide 83% of total care to individuals with dementia. In 2018 alone, 18.5 billion hours of care valued at $234 billion were provided by family, friends, and other unpaid caregivers.
Fortunately, healthcare systems and various not-for-profit foundations and advocacy organizations are exploring more comprehensive approaches to dementia care which provide resources for caregivers that can reduce their stress.
On July 30, 2019, Resources for Integrated Care aired the webinar, "Diagnosing and Treating Dementia – Current Best Practices." During this event, experts discussed examples of community-based and health system-based comprehensive care programs targeted at individuals with dementia, as well as their unpaid caregivers.
UCLA Alzheimer's and Dementia Care Program
Dr. David Reuben, Chief of the Division of Geriatrics at UCLA's David Geffen School of Medicine and Director of the UCLA Alzheimer's and Dementia Care (ADC) Program noted that over half of unpaid caregivers develop depression. Yet, the more empowered that caregivers are with relevant knowledge and resources, the better care they are able to provide to family members or friends.
The UCLA ADC Program uses a co-management model, where nurse practitioners serve as Dementia Care Specialists (DCSs). They work collaboratively with the patient's physician. The Dementia Care Specialists don't take responsibility for the patient's primary care, but they work with physicians to provide dementia care. They take on duties, such as:
Conducting in-person needs assessments
Developing customized dementia care plans
Monitoring how the care plan is working for patients and caregivers, and revising as necessary
Providing access to patients and caregivers 24 hours a day, 365 days a year
From a personal perspective, I would have welcomed such a program when I was caring for my Dad. It felt like the primary care physician's office dealt with such a wide variety of patients that there was no resource that could help me navigate the very specific needs of an individual with dementia.
After one year participating in the UCLA ADC Program, caregivers reported dramatic improvements in their confidence and well-being. For example:
Over half (60%) indicated they were better able to find community-based services, compared to 20% before the program
Over half (62%) were confident they could handle dementia-related issues, compared to 32% before the program
Over three quarters (78%) reported that they knew where to turn to get answers, compared to 35% before the program
Over three quarters (76%) indicated that they had access to a healthcare professional who helps, compared to 25% before the program
Community-Based Programs: Best Practice Caregiving
Another approach to comprehensive dementia care is the Best Practice Caregiving initiative. The Benjamin Rose Institute on Aging and Family Caregiver Alliance are collaborating on this project which will provide an online compilation of evidence-based dementia caregiving programs. This initiative is currently in beta testing, but is expected to launch in Fall 2019.
One of the programs included in the Best Practice Caregiving initiative is BRI Care Consultation. This evidence-based, care coaching program helps professionals deliver cost-effective assistance and support to individuals with chronic conditions, as well as to family caregivers. Services are provided by phone and email.
BRI Care Consultation uses a three-part framework to structure services:
Assessment. During this phase, professionals help families identify care-related challenges.
Action Plan. The action plan is designed to help families move toward solutions. Examples of action steps include contacting service agencies, reading consumer-ready information, or asking other family or friends for caregiving assistance.
Ongoing Support. As the care situation changes, coaches provide ongoing help.
As a former caregiver, I'm encouraged that health systems, as well as funders like The John A. Hartford Foundation, Archstone Foundation, and The Retirement Research Foundation, are investing in programs that take into account caregiver needs. Alzheimer's and dementia aren't going away anytime soon. However, reducing the anxiety and stress associated with caring for a family member with dementia could go a long way towards decreasing burnout.
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