Is DICE the Key to Managing Dementia Without Medication?

Karl Sieloff, 56, had been an engineer at General Motors for more than three decades. Each day he arrived at work on-time and always had a good attitude. He went home to his loving wife, Kate, and was proud of their son, Kurt, who became a neurologist at the University of Michigan’s Medical Center.

That year, Kate began to notice that Karl had been acting strange. Her hard-working, affectionate spouse was suddenly having fits of anger and aggression that were directed at her. He also became irresponsible in that he stopped paying the bills and some days, he didn’t even show up for work, finding it too hard to get out of bed. The last straw was when he began depleting their savings on impulsive purchases and grew even more aggressive and violent.

Most people who didn’t live with Karl couldn’t see what was really going on and thought perhaps he was suffering from depression. Doctors tried him on a variety of antidepressants, but that didn’t treat the entire problem. Karl and Kate’s son, Dr. Kurt Sieloff, insisted that they bring Karl to his hospital for evaluation, where he was quickly diagnosed by Kurt’s colleagues with frontotemporal dementia (FTD).

Kate felt mixed emotions when she received her husband’s FTD diagnosis. While the diagnosis itself was a relief, she found that she was becoming overwhelmed and needed help coping with her husband’s illness. To treat his symptoms, doctors started Karl on a mood stabilizer and a new antidepressant to control his mood swings while restoring some of his loving personality. Unfortunately, there is no drug that can prevent or stop the eventual progression of FTD (or any other type of dementia), and the behaviors that result. What Kate needed most was something that could help make her day-to-day caregiving more tolerable, and strategies to help Karl when the confusion sets in.

The DICE Method Focuses on Behaviors Rather than Memory Loss

Researcher Helen Kales, MD, PPA, is a geriatric psychiatrist who practices at the University of Michigan, who has developed a behavioral approach to dementia care. Her DICE approach focuses on behavioral interventions rather than pharmaceutical, puts the caregiver first, and emphasizes training and support for them as much as for the patient.

According to Kales, “(b)y teaching caregivers new ways to solve old problems, and to respond to their own needs as well as those of their loved ones, the approach helps ease their burden while improving the patient’s experience.” Kales compares it to airplane safety rules, which direct passengers to put on their own oxygen masks before helping someone else.

With the introduction of the DICE method, there is now a successful way to assess, evaluate, and intervene in behavioral disturbances associated with dementia. The components of the DICE approach are:

D: Describe – Describe the “who, what, when and where” of situations during which problem behaviors occur for your loved one with dementia, and the physical and social context for them to your doctor. Caregivers could take notes about the situations that led to behavior issues, to share with health professionals during visits.

I: Investigate – Have the health provider look into all the aspects of the person’s health, dementia symptoms, current medications and sleep habits, that might be combining with physical, social, and caregiver-related factors to produce the behavior.

C: Create – Work together. The patient’s caregiver and health providers can collectively develop a plan to prevent and respond to behavioral issues in the person with dementia, including everything from enhancing the patient’s activities and environment, to educating and supporting the caregiver.

E: Evaluate – Give the provider responsibility for assessing how well the plan is being followed and how it’s working, or what might need to be changed.

Within the DICE approach, behavioral triggers from the caregiver (unrealistic expectations, caregiver stress/depression, etc.); person with dementia (medical conditions, functional status, etc.); and environment (overstimulation, lack of routines, etc.) are evaluated and addressed by the provider and caregiver. This approach puts behavioral and environmental strategies ahead of drugs in the management of dementia behaviors and is consistent with the stance of multiple medical organizations and expert groups on preferred dementia treatments.

Other Findings for Behavioral Rather Than Drug-Based Approaches

To develop DICE, researchers from the University of Michigan Medical School and Johns Hopkins University reviewed two decades worth of research to reach their conclusions about behavioral, rather than drug-based approaches. In addition to the development of DICE, researchers laid out these findings to help caregivers deal with behavioral issues:

• Create meaningful activities for the person with dementia;
• Simplify tasks and establish structured routines;
• Ensure safety and simplify and enhance the environment around the patient, whether in the home or the nursing/assisted living setting;
• Enhance effective communication between the caregiver and the person with dementia;
• Provide more education and respite for caregivers.

Examples of putting these suggestions into practice include de-cluttering the environment of someone with dementia, using music or simple activities that help to engage him or her, or using a calm voice instead of being confrontational, to reduce behavioral symptoms. In addition, making sure that caregivers get breaks from their responsibilities and take care of themselves, especially in the home, can help them avoid burnout and taking their frustration out on patients.

Behavior-based Strategies Can Be Empowering for Caregivers

Kales believes that “(b)ehavior-based strategies may take longer than prescriptions. But if you teach people the principles behind DICE and other behavioral based strategies, the approach becomes more natural and part of one’s routine. It can be very empowering for caregivers or nursing home staff.”

Unfortunately, DICE will likely not become as widely used as drugs because “our health care system has not incentivized training in alternatives to drug use, and there is little to no reimbursement for caregiver-methods.” On a positive note, however, Kales and her team are working on an online tool called the WeCareAdvisor to assist caregivers who are interested in using the DICE method. It is still in development. Please click here for details.

Hopefully the behavior strategies described above will help you if you are a caregiver for a loved one with dementia!

Do You Have a Loved One with Dementia? The Time to Plan is Now!

New, non-drug, strategies to deal with the behavioral aspects of dementia can certainly be helpful for those with the disease, their loved ones, and their caregivers. But what if, despite DICE or the other tips provided, you can no longer care for a loved one with dementia in the home, and nursing home care is needed?

When it comes to legal planning for long-term care, generally the earlier someone with dementia plans, the better the result. But it is important to know that it’s never too late to begin the process of Long-term Care Planning, also called Life Care Planning and Medicaid Asset Protection Planning.

Medicaid planning can even be started by an adult child acting as agent under a properly-drafted Power of Attorney, and even if your loved one is already in a nursing home or receiving other long-term care services. If you have a loved one who is suffering from any type of dementia, please feel free to call us for an initial consultation:

Medicaid Planning Fairfax: 703-691-1888
Medicaid Planning Fredericksburg: 540-479-1435
Medicaid Planning Rockville: 301-519-8041
Medicaid Planning DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.