Caregiving is never easy, and providing dementia care can come with a lot of difficulty and confusion. The physical and emotional aspects of caring for dementia patients requires a lot of time and effort, and caregivers are usually untrained, so they don’t always know what to do in challenging situations, making the process even more cumbersome.

What are the stats?

This is a significant group to consider because of the large numbers. There are currently 5 million dementia sufferers in the US, and about 15 million people who are alternating care of these patients. These numbers are only set to increase, with a projected 16 millions sufferers by the year 2050.

Providing better dementia care

One of the reasons it is so difficult to care for dementia patients is that they can become very agitated and aggressive. This takes a huge toll on the caregiver, who is normally a loving family member.

The National Institute on Aging is taking a step to help caregivers by bestowing a $4 million grant for two expert doctors to review a platform for dementia caregivers called WeCareAdvisor. This platform gives tips for caregivers, information about dementia, ideas for dealing with the stress, and a system called the DICE approach – “describing, investigating, creating and evaluating strategies.”

Laura Gitlin MD, of Drexel University, is one of the doctors working on the project. She said ” Family caregivers are rarely informed about behavioral and psychological symptoms nor do they have opportunities to learn about specific proven nonpharmacological strategies that can prevent, reduce and/or manage these symptoms.”

Dr. Gitlin created the platform along with Dr. Helen Kales, of the University of California, Davis, and Dr. Constantine George Lyketsos, of John Hopkins University. The platform evaluates the factors in each unique situation and customized a strategy for each caregiver.

For example, if a caregiver says that the patient is refusing treatment, the platform will provide a number of communication options for the caregiver to use to get the patient to comply. Some of these might be talking slowly or using a minimum amount of directions.

Evaluating goals

The doctors will use this grant to study how well the platform is meeting its goals. They will look into questions such as, are caregivers calmer? Do they have better tools for dealing with the stress? They will also assess which of the solutions that the tool offers they like best and best meet their needs.

The authors are planning a randomized study that will follow 326 caregivers in the Philadelphia, PA area for six months to assess these questions and see how well the platform is performing. A previous pilot study followed 57 caregivers, mostly spouses, for a month’s time, and showed that the platform provided a “significant decrease in caregiver distress.” The new study is meant to continue along the same path and see if the same results can be found among a broader group of participants.

At Sinai Post Acute Care Center for Rehabilitation in Newark, New Jersey, we offer outstanding dementia care services for our patients.