And the Oscar for Best Alzheimer’s Patient Goes to. . .

Joyce Griffen, a retired anthropology professor at Dartmouth University, spends many hours a week rehearsing and playing different roles. She’s not involved in theater and hasn’t been since college. However, in a week’s time, she can assume the role of someone with dementia, Parkinson’s, chronic pain, and other age-related disorders.

According to the Center for Disease Control (CDC), 90% of Americans who need long term care get it from unpaid family members. That puts a strain on a lot of relatives who have neither enough time nor the training to care for loved ones with brain disorders such as dementia.

“Family caregivers are often thrust into this role of providing medical care without medical training,” says Justin Montgomery, a clinical nurse and nurse practitioner at Dartmouth-Hitchcock’s Aging Resource Center. The Center had answered the need for training by offering classes featuring role play opportunities for participants. The training program, paid for by a federal grant through the Health Resources and Services Administration, is one of the oldest simulation training programs of its kind, and it employs 15 actors, including Ms. Griffen, between 68-93 years old.

Last month, 16 caregiver spouses gathered at the hospital’s simulation center in an attempt to boost their caregiving skills. Those who attended learned how to deal with challenging behaviors and how to solve real-life issues. In the process, the group also learned, through role-play, how to deal with someone who is impaired and difficult.

As part of the training, each participant was videotaped in a pretend scenario with an actor who refused to get dressed, or was exceptionally argumentative, difficult, or negative. To make the portrayal seem authentic, one of the actors, Mark Cookson, was made up to look 30 years older. Fake bags were placed under his eyes, adhesive creases etched his forehead, and flesh-colored spray drained the natural color from his face. He portrayed a crotchety old man with advanced Parkinson’s disease. In character, wearing a bathrobe and a frown, he slumped in a chair in a simulated hospital room. He acted as if he had trouble speaking and stiffened as his caregiver (a class participant) tried to steer him into bed.

After the role-playing, the actors and fellow caregivers offered feedback on the caregiver’s body language and interaction about what worked and what didn’t, including how well caregivers picked up on non-verbal cues.

Reading body language is a big topic in the three-hour seminar, which also includes information about how the brain changes at the onset of Alzheimer’s and other dementias and how to respond safely to challenging or dangerous behavior. The advantage of stimulated training is that participants can watch and see what the body language is telling them and learn how they should interact with someone based on posture and stance and all the ways other we communicate without saying any words.

Dartmouth-Hitchcock’s Aging Resource Center is the only geriatrics center in the U.S. that makes such heavy use of role-playing with actors as patients. However, training for caregivers, including various online options, does exist. These are some available caregiver training options:

  • The Alzheimer’s Association has several free, online tools to help caregivers find answers, local resources and support.
  • The National Parkinson’s Foundation has a list of caregiver resources and a free manual called Caring and Coping.
  • AARP has several free on-line seminars on family caregiving topics such as housing options, the basics of handling caregiving, providing the care, and planning for the care of aging parents.
  • AARP has also prepared comprehensive materials for caregivers called “Next Step in Care.” Although the focus isn’t on nursing-style caregiving tasks, three might be useful: a self-assessment tool for family caregivers, a medication management guide, and a guide to hospice and palliative care.
  • Many home health-care companies, such as Five Star Home Health care in Fairfax, offer a 40-hour Caregiver class, where you can learn personal care assistance; home management; safety and accident prevention; infection control; and food, nutrition, meal preparation and how to help a loved one with activities of daily living such as bathing and toileting.
  • The American Red Cross offers a training manual for caregivers that has a DVD explaining the mechanics of transferring another person from bed to chair and back, and a few other complicated tasks.
  • Also, some videos are available for free at www.mmlearn.org, a Web site that says its mission is to provide caregivers with online training and education.

In addition, the best way for caregivers to learn caregiving techniques is to ask a professional for help. If your loved one is in the hospital, make sure care instructions are clearly explained to you before discharge. If you don’t get them to your satisfaction, don’t sign the form that says you have been given instructions on what to do. The hospital is legally obligated to ensure that discharges are safe, and this operates in a caregiver’s favor. The same goes for the pharmacy: don’t sign that sheet that the pharmacist hands you indicating that you have been adequately informed about the medications you are purchasing if you haven’t been.

Caregiving can be rewarding, but it is also physically and emotionally demanding. The Fairfax and Fredericksburg Elder Law Firm of Evan H. Farr advises that if you are a caregiver, don’t let your own needs or health take a back seat.  Many caregivers are at the age when they are developing their own chronic medical issues. Be sure to take good care of the person you are caring for and yourself too! Part of doing so is planning for your future and for your loved one’s future. Call us today at 703-691-1888 in Fairfax or 540-479- 1435 in Fredericksburg, to make an appointment for an introductory consultation.

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