How To Help Dementia Caregivers Through Role-Playing Exercises

What Role-Playing Can Teach Dementia Caregivers

There are numerous avenues to receive knowledge regarding Alzheimer's dementia care. You can research online, read books, go to support groups, watch videos and attend in-person seminars.
Choosing one, or all, of these educational avenues will help you on your journey; yet, in my experience, I have learned the most from in-person educational experiences that include interactive role-playing (acting out a scenario with one person presenting dementia symptoms).

Role-play puts you in a loved one's shoes

Attending a program with role-playing scenarios is very useful. Most caregivers who accompany a loved one on his or her journey with dementia are adults; and adults learn in different ways than children do.

As adults, we rely on our personal life experiences, as well as our practical experiences, to inform our behavior. An interactive educational program allows you to not only receive the information, but also gives you the opportunity to practice the new skill set you have learned.

For example, classes offered at the Dartmouth Hitchcock Medical Center in New Hampshire feature real-life actors and actresses playing the parts of people with Alzheimer's, Parkinson's and other ailments to expose professional caregivers to different scenarios they may encounter while caring for aging adults.

One of the core skill sets needed as a dementia caregiver is the ability to read another's body language, and to realize what one's own body language is communicating to others. The best way to learn about body language is by role-playing.

Some of the most eye-opening experiences I have had have been when I am "acting" as a person with dementia. This type of role-playing allows you to put yourself in another's shoes and experience how approach and engagement with body language can be perceived.

Practicing your new knowledge and skill set before trying it at home will help you, as the caregiver, become more at ease and decrease your anxiety and stress. By reducing your anxiety and stress, you can help prevent negative behaviors and outbursts by your loved one who is on their journey with dementia. Both they and you will have a better day by avoiding unnecessary increases in stress levels that accompany such behaviors.

Practice makes perfect when preparing for uncertain situations

Another reason that the role-playing aspect is such a valuable way to learn is because of the "practice makes perfect" concept.

While I am presenting my in-person educational programs, I revisit the fact that what works this minute may not work the next minute.

At many seminars, a caregiver will receive education in a non-interactive way; after which, they will go home and try to implement what they learned with a loved one. If particular method does not work for them, it is easy to enter into one of the following mindsets: this tool does not work with my loved one; I, as the caregiver, did not do it right; or, I do not feel comfortable with the skill set I learned.
This can make a caregiver reluctant to revisit that skill, even though it may be exactly what they need to make their day-to-day experience with their loved one more enjoyable.

With an in-person, interactive educational program, you are able to learn, practice, practice again, ask for guidance and clarification, and become more comfortable in your own ability to engage with your new skill set.

Everybody makes mistakes—and that's okay

The greatest part of an interactive educational program occurs when the caregiver gets comfortable enough with role-playing that they are able to laugh, smile and not worry too much if they make a mistake. As an educator, when I see my professional and personal caregivers get to the point of smiling and laughing, I know they are embracing the new skill and have become comfortable enough to try it outside of the education setting.

Many times, caregivers will stop trying to use a new skill set because they fear making a mistake and are afraid of how it may affect their loved one.

By taking part in an interactive class, you get to work out some of the kinks before you go home.Also, this process gives you a better chance of the skill set sticking. (I will be the first to tell you that I make mistakes with engagement—and I still do even after 15 years of engaging with others on their journey with dementia.)

The point is to avoid beating yourself up if you are not perfect at a skill you have just learned. Embrace it, practice it, and observe the interactions to figure out which approach gets the best reaction from your loved one.

Not every dementia caregiver will have access to in-person role-playing seminars and courses, but any way of gaining more information is better than not continuing to learn about your loved one's condition. Remember, all educational avenues are helpful.

Continue to learn and grow in your skill set and practice, practice, practice! Wishing you strength, courage and happiness with those in their days gone by.

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How To Handle Changing Elder Care Needs

During the years I cared for multiple elders, I grew to dread the ringing of the telephone. It seemed most calls meant emergencies. One example? My neighbor, Joe, for whom I was the primary caregiver, wore a personal alarm so that he could push a button to notify a dispatch center if he had an emergency. The dispatch center would call him back. If he didn't answer his phone, they'd call me.
The moment is frozen in time for me when, just hours after I left his house, my phone rang. It was the dispatch center telling me that Joe had punched the help button and wasn't answering his phone. I immediately ran across the yard and pushed through the door. Joe was lying on the floor, with one leg at an unnatural angle. In agony, he just said "help me." Joe had broken his hip. I called 9-1-1 and we rode in the ambulance to the hospital. A few days later, Joe was moved to a nursing home, but he died within weeks.

My mother also wore a personal alarm, and I received frequent calls from the dispatch center to check on her. It was a short drive to her apartment, but always an anxiety laden drive for me. What would I find? Mom fell often, and that meant frequent trips to the emergency room. Eventually, because of the falls and other medical issues, she needed nursing home care, so we moved her to a
nearby facility.

For my dad, the life-changing situation was brain surgery gone seriously wrong, which for him, also meant a move to the nursing home. For my uncle, it was a massive stroke.


On duty 24/7
One of the most exhausting parts of being a caregiver, from my point of view, is that there's always the threat of an emergency that we are responsible to handle. We are literally on call 24 hours a day, seven days a week, even if our elders don't live in our own household.

Of course, anyone can have a life-changing emergency. A spouse can be in a car accident. A child can be injured playing a sport. However, when we are caregivers to vulnerable people who are completely dependent upon us, and who likely have health problems to begin with, we are much more apt to face an emergency that can change current plans for anything from a few hours to the rest of our elders' lives. Frequently, that change means hiring outside help such as in-home care or moving our loved one to a care facility.


How do we prepare to handle the potential, often rapidly changing needs of our loved ones?

• Work with your elders to make sure that you (if you are the primary caregiver) have the Power Of Attorney for health care, often called a health directive. Be sure that their clinic, hospital and doctor have a copy of this document. Keep a copy in the glove compartment of your car, and of course with their (and your) important papers at the homes. With this document on record and/or in hand, you can make the decisions necessary to continue caring for your elders if they can't speak for themselves.
• If possible, plan ahead with your loved ones about their preferences should life-changing emergencies occur. Do they prefer in-home care, if that is an option? Or is there an assisted living facility or a skilled nursing home that would be better? Maybe you'd like to tour local facilities with them, if they are willing. Never promise not to "put them in a nursing home." Just tell them that you want to know their preferences for care under different scenarios and that you will do the very best thing for their health and safety, given the circumstances at the time.· If your elders live on their own, even if there are two of them, I'd suggest a personal alarm for each of them – or some type of monitoring – so that they can summon help should they not be able to phone.
• Help them make a list, to be placed in an obvious spot such as on the refrigerator, for emergency crews. This list should include emergency numbers, medications and allergies, along with known illnesses such as diabetes. Don't make this list too complicated. If there is a lot of information for medics, provide the most necessary information on the emergency sheet, then write "a more complete list is on the kitchen table," or wherever there is a convenient spot for a longer document. The idea is that if medics arrive before you do, they should be able to quickly note any essential health information that would assist them in tending to your elder.
• Keep copies of their Medicare and other insurance cards in their wallets, however keep originals with you. In this way, you can do the paperwork in the emergency room while they are being helped by medics. This system helped me several times when my parents were rushed to ER from the nursing home. I signed them in while they were being transported. Then I could be with them as soon as they arrived.
• Have a dependable replacement in mind that can help with emergencies if you become unavailable for any reason. This will benefit your elders and yourself. You may even be able to take a few days off from the stress of being on call 24/7.

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Medicaid versus Medicare: Who Covers Nursing Home Costs?

Because a stay in a nursing home may be covered by either Medicare or Medicaid, it can be confusing to determine which program will cover your family member's stay. While both programs may indeed cover at least some portion of a visit to a nursing home, there are important differences to the rules.

Medicare coverage of nursing home costs
In order for Medicare to cover a person's nursing home stay, the person must:

• Have been hospitalized for medically necessary inpatient hospital care for at least three, consecutive days, not counting the date of discharge,
• Be admitted to the nursing home within 30 days after the date of discharge from the hospital,
• Require skilled nursing or rehab care on a daily basis for a condition for which the patient was hospitalized, and
• Receive a physician's order that such care is needed.

The difference between skilled care and custodial care
Skilled care is care that can only be administered by professional (physician or nurse) or technical personnel, and which will prevent further deterioration in the patient's health. Examples include: intravenous feeding, injections, insertion of catheters, application of sterile dressings, treatment of skin ulcers, and therapeutic exercises of various kinds (physical therapy). Less medically-intensive and critical personal care services—even if performed by a nurse—are not considered skilled care.
If the care the patient requires is not considered "skilled care," as defined above, such care is called "custodial care." This is the type of long-term care is typically received in a nursing home. Only Medicaid—not Medicare—covers custodial nursing home care.

The co-pay rule
Medicare will only cover a patient for a maximum of 100 days (per separate spell of illness), if it covers the patient at all. During days one to 20, Medicare will cover the entire cost of the nursing home stay. For days 21 to 100, the patient must pay a co-pay, which is currently set at $152 per day. If care is needed beyond the 100-day limit—or if patient no longer needs skilled or rehab care before 100 days have passed—then the patient must either pay privately, be covered by some form of insurance or qualify for Medicaid.

Medicaid rules for skilled nursing payments
Medicaid is a "needs-based" program, meaning that the patient cannot have more than a certain minimal amount of assets and income in order to be covered. Medicare, on the other hand, is available regardless of the patient's income or assets, if they meet the other requirements. Also, there is no mandate that a patient require skilled or rehab care in order to be covered by Medicaid, as there is for Medicare. To find out the asset and income limits in order to qualify for Medicaid, see "Assets You Can Have to Still Qualify for Medicaid" and "How Can My Elderly Loved One Qualify for Medicaid?"

A note about dual-eligibles
Finally, keep in mind that it is possible to be covered by both Medicare and Medicaid, simultaneously. Such individuals are known as "dual eligibles." For these elders, Medicaid covers those expenses not covered by Medicare, such as paying the Medicare premiums and cost-sharing requirements and paying for long-term custodial care, while Medicare would cover hospitalizations and related medical costs along with skilled care in a nursing home.

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Nearly two-thirds of Americans who take medications report that they are not always taking their medications as prescribed, while only 33 percent say they never miss taking their prescription medications. Not surprisingly about 20% of adverse drug events seen in outpatient care due are to medication errors and 10% of hospital stays are the result of a medication error [1].

 

For people with dementia, it can be particularly hard to stick to a medication routine. Missing medications can make it increasingly difficult getting back on track, with health risks worsening when dementia is present with other conditions, such as a heart condition². The responsibility often falls on a caregiver to sort bill boxes, order refills, keep records, and attempt to ensure that their loved one is taking the right medications at the right time.

 

 

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*Although the PillPack program is open to all, The Caregiver’s Voice focuses on caregivers for people with cognitive impairment caused by dementia and seeks a caregiver caring for a loved one with dementia to review PillPack’s service in return for a free membership.

 

[1] “Interventions to Improve Adherence to Self-administered Medications for Chronic Diseases in the United States” Annals of Internal Medicine, Ann Intern Med. 2012 Dec 4;157(11):785-95.

 

[2] “The effect of dementia on medication use and adherence among Medicare beneficiaries with chronic heart failure” American Journal of Geriatric Pharmacotherapy. 2012 Feb;10(1):69-80. doi: 10.1016/j.amjopharm.2011.11.003. Epub 2012 Jan 20.

 

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