Although we casually think of Alzheimer’s as memory loss, any caregiver will tell you that it’s far more than that—depression, anxiety, agitation, delusions, hallucinations and apathy are all symptoms, and they all can take a great toll on the caregiver. How to cope with this often martyring challenge?
A strategy that goes by the acronym DICE and is forged by a partnership between patient, caregiver and health-care provider has gotten a lot of buzz in the health-care community. The Centers for Medicare and Medicaid Services will include DICE in their training and resource modules for health-care providers. If you are the caregiver of someone with dementia, DICE really can improve life for you and the person you care for.
FOUR STEPS TO WORK IT OUT
DICE is a four-step process in which the patient, caregiver and a health-care provider—it could be a geriatrician, geriatric psychiatrist, nurse practitioner or physician assistant, social worker or similar professional trained in dementia care—work as a team to identify the real causes of a patient’s “bad behavior” in any given situation and come up with solutions.
The four steps are…
- D…escribe. Encouraged by the health-care provider, the caregiver describes a specific event that exemplifies the patient’s behavior problems to the health-care provider in a way that gets the caregiver to relive the episode with all its details and feelings. One way of doing this is to describe the event as if it were a movie scene. This conversation may take place in person or over the phone, and the patient may also be present. The caregiver may be encouraged to record episodes of problem behavior in a journal so that one or another episode can be easily remembered and discussed when meeting with the health-care provider. Unless dementia in the person being cared for is so severe that he or she can’t communicate anymore, the health-care provider also gets that person’s version of the story. The provider then helps the caregiver think about what led up to the event being discussed and its aftermath to get insight about the context and patterns underlying it.
- I…nvestigate. The health-care provider then investigates the cause of the problem. Issues to be probed include whether another medical or psychiatric condition is at play, whether the patient’s behavior is related to side effects of medications, whether he or she is in pain or not getting enough sleep or is frightened, depressed, bored, etc. or whether the dementia is simply getting worse. Much of this can be learned from a physical and psychiatric exam. Follow-up laboratory work may also help shed light on underlying causes (such as a urinary tract infection). The caregiver’s expectations and any social or cultural issues, such as economic status, education level, ethnic traditions and religious beliefs, of the caregiver and patient might also be examined.
- C…reate. Together, the caregiver and health-care provider—with participation from the patient, if possible—create a plan for positive change. The plan begins with the health-care provider addressing problems discovered during the investigation. For example, a medication might be discontinued if it is thought to be causing a behavioral side effect…pain management might be started if pain is the issue…more intensive psychiatric care might begin and any other newly discovered health need of the patient will be attended to.
The caregiver will be directed toward education resources and support groups, and the caregiver and health-care provider will work together to improve communication with the patient, simplify caregiver tasks, create structured routines and establish meaningful activities for the patient (such as revival of a hobby or participation in an adult day-care program) to help minimize his or her boredom, frustration, fear or other difficult emotions.
- E…valuate. The health-care provider then evaluates the plan as time goes by. Is the caregiver using it? Is it working? If so, great! If not, a reassessment takes place to tweak and optimize the plan.
A SIMPLE EXAMPLE IN PRACTICE
This example illustrates a problem situation that DICE is meant to address.
Imagine that you’re the caregiver of a relative—maybe your mom—with Alzheimer’s disease. You’re preparing to bathe her and think you are being gentle as you lower her into a tub, but she physically and verbally lashes out at you, exclaiming that she’s in pain. Well, you’ve been through this before with her and think that she’s intentionally giving you a hard time. How could she possibly be in pain? You were handling her with kid gloves!
These misunderstood problem behaviors, also referred to as noncognitive neuropsychiatric symptoms, are often so stressful for caregivers that families sometimes put loved ones in nursing homes much sooner than they really want to.
With the DICE approach, you would relate the event in detail during an appointment with a specialist trained in dementia care. The specialist would get you thinking about what might be causing this repeated problem and would also get your mother’s take on the situation. The specialist would arrange for Mom’s physical and psychiatric evaluation and, in examining her living space, might question you about whether the tub has grab bars, nonslip mats or other fixtures that would make bathing less stressful for her.
Suppose that, during the physical examination, it’s discovered that your mother has arthritis but isn’t on medication for it. The specialist explains that Mom means it when she says she’s in pain. Pain medication is prescribed, and your mother is referred for physical therapy. Meanwhile, you get to work outfitting the bathroom and other parts of the home to make them more user friendly for your mother. The specialist also provides you with educational counseling, reading material and referrals to support resources to help you better understand what your mother is going through…and to help you feel less alone.
PLAYING WITH THE DICE APPROACH
The DICE approach is only recently being rolled out in a formal way, with training for health-care personnel being developed and a clinical trial underway. Its real value and feasibility won’t be fully known until its use becomes more widespread and clinical trials are completed to scientifically prove its value, ease of use and cost effectiveness. If you would like to try the DICE approach, start by asking your loved one’s health-care providers whether they are familiar with it—they may be able to refer you to a specialist or a practice that provides a similar service. Also contact a geriatric psychiatrist, whose training makes it more likely that he or she will apply an approach similar to DICE when working with dementia patients and their caregivers. You might even find that some or all of this is covered by insurance, depending on your loved one’s coverage.