By Sara Michael
Such routine activities as bathing, taking medications, or even navigating the route to the bathroom can become great challenges for patients suffering from dementia and memory loss.
Armed with some simple coping strategies, caregivers can make daily life a bit easier for these patients, and for themselves. At the Johns Hopkins Memory and Alzheimer’s Treatment Center, nurses provide families and caregivers with tips and approaches for managing the deteriorating cognition – just one of the many ways nurses are having a major impact on care at the center.
“The patient might not want to get a bath, and they have agnosia where they don’t recognize what soap is”, says Joan Krason, MSN, RN-BC, one of the center’s three nurses. We work with the families to have things set up in front of them and work it out step by step.
Caregivers might not realize how simple tasks take more time, or their loved one might be confused, Krason explains. “Family members feel a lot of stress”, she adds.
Providing these strategies, gleaned from experience and a deep knowledge of the illness, is a critical piece of care at the clinic, which is a partnership between the departments of psychiatry, neurology, and geriatric medicine. Patients, who are either self-referred or referred from their physicians, come to the center for a comprehensive evaluation and treatment for a range of cognition and memory conditions.
“We provide the support for patients and their families throughout their journey”, Krason says.
The care starts with the initial visit, where clinicians rule out other potential causes for memory loss, such as migraine headaches, sleep apnea, or overmedication. Once a diagnosis is made – often for Alzheimer’s, the most common cause for dementia – nurses work with the families to provide resources and help them understand care options. Is home care an appropriate choice? Have they considered power of attorney with their loved ones? Where can they access more information or support groups?
“It can be overwhelming for the patients or their families to be given a diagnosis of Alzheimer’s disease or any kind of dementia,” Krason says. “There is so much information out there on the Internet, and families have a difficult time finding out what to pay attention to and what is the most accurate information.”
The nurses’ role has evolved to one of collaboration, as they team with physicians for the initial appointment and the plan of care for subsequent visits, says Jennifer Mason, RN, BSN. If a patient is diagnosed with dementia, the patient and caregiver return for a nurse-run educational visit, where the nurse conducts a needs assessment and provides support and information for the patient and caregiver. This is unique to the center, as caregivers often are unprepared for the diagnosis, and nurses fill that need for support, Mason says.
Every three to six months, the team meets with caregivers to assess their symptoms, and they may decide to set up additional time with the nurse to explore new coping strategies, depending on the stage of the disease. Perhaps they need help modifying the home to be more comfortable and manageable for the patient, such as reducing clutter or using color to attract the patient to the bathroom.
Mason also runs a monthly caregiver group class dedicated to a specific topic, such as how to manage difficult behaviors or what to do after a diagnosis. This allows the caregivers to informally ask questions and connect with each other.
“It’s hard to see what they’re going through. The caregivers are really struggling,” Mason says, adding the silver lining is in seeing the caregivers thrive and then offer support to other families. “We feel good when we can actually see it make a difference.”