Dementia is devastating. Most of us have seen or experienced the toll on families that comes with caring for someone with Alzheimer’s disease or similar conditions. There are an estimated 8.5 million family members providing dementia care at home and, with no cure on the horizon, this number is expected to rise sharply.
Compared to families caring for older adults without dementia, these family members are twice as likely to report that caregiving has negative effects on their physical and emotional health, employment, finances, and family relationships. These caregivers face stresses that can irreparably damage their own health and well-being.
Families Caring for an Aging America, a report released by the National Academies of Sciences, Engineering, and Medicine in 2016, emphasized the importance of providing support to this particular group of caregivers. Dementia caregivers face a unique set of challenges as older family members may become aggressive, lose their ability to recognize them or speak, and may wander from home.
Family caregivers of all types are increasingly expected to manage complex medical tasks (e.g., giving injections, managing medications, or providing wound care) with little or no training. You can imagine how this lack of training and support adds an even higher level of stress for caregivers of people with dementia, and puts the person with dementia at real risk of harm or nursing home placement.
Helping Families Find Hidden Treasure – Making Dementia Caregiving Support Programs More Available
For the millions of families caring for someone with dementia, finding the support they need is like digging for buried treasure. Family caregiver support programs exist that are worth their weight in gold, but they are hard to find without a guide who has the right map.
This is because there are dozens of support programs for family caregivers of people with dementia that have been shown to work, but they are not widely used by the health care and social service organizations that have the most contact with family caregivers. At least 50 programs have been studied by researchers over the last few decades showing positive outcomes for families and their relatives. These proven programs are ready for wider use, but remain largely inaccessible to families desperately in need.
Why? One key problem is that the agencies and organizations serving family caregivers don’t have an easy way to choose between the numerous available programs they might implement, nor do they understand the outcomes they might achieve. They can’t tell what will work for their organization and the population they serve, how much it will cost, or what kind of staff and training they will need. As a result, they don’t offer these support programs that could greatly benefit caregivers.
Help is on the way. The John A. Hartford Foundation recently funded a 30-month project that will produce a comprehensive website for medical care and social service organizations that will allow them to compare dementia caregiving programs in order to select the right services for the families they support.
Think of it as a map to help guide organizations to the buried treasure of proven dementia support programs that will work for them. The resource will include information on key findings from research on each program, and practical information from real-world experiences of organizations and providers who are using these programs successfully.
The project to develop this web resource is a collaboration between the Benjamin Rose Institute on Aging and the Family Caregiver Alliance. These two outstanding organizations have an excellent track record of serving family caregivers through research, programming, and advocacy initiatives over the past 15 years.
This is just one effort to increase access to valuable support programs for caregivers of older adults with dementia. We also desperately need:
- policies that better support payment for these services;
- more practical guidance on how to effectively implement the programs we currently have; and
- we need to add to our treasure trove by expanding and testing programs among different populations, in different regions, and in a range of cultural contexts.
Together, we can help family caregivers of people with Alzheimer’s and other forms of dementia find the support and services they need to keep themselves and those they care for safe and healthy. It is time to unearth these valuable, but largely scattered and hidden, resources.
If you are seeking immediate help with dementia caregiving, please see the below resources:
- For an excellent overview of dementia caregiving, visit the Family Caregiver Alliance National Center on Caregiving.
- The Alzheimer’s and Dementia Caregiving Center offered by the Alzheimer’s Association has a wide range of offerings, including what to expect at each stage of the disease, suggestions for activities and difficult behaviors, and a caregiver’s forum and message board for questions and support.
- The VA Caregivers Support Program offers a series of short videos about dementia in-home care, including home safety, legal matters, dealing with problem behaviors and learning relaxation techniques (scroll to end of page for videos).