Identifying Needs of Medical Professionals, Community Members in Relation to People with Dementia
In our shareposts, we often focus on the needs of the person with dementia and the caregiver. But I recently had the opportunity to attend a conference put on by the regional chapter of the Alzheimer’s Association that helped me realize that there are other stakeholders who have important needs that are often not discussed.
Take the medical profession. They need honest and accurate reporting from the patient and the family about the patient’s health issues. And they also need to know that the patient and family are willing to follow the treatment plan and stay in contact with doctors to address problems as they arise. And that, from my experience, is where it can get tricky. In our family’s case, Mom didn’t want family members present in her doctor’s appointments, but she wouldn’t remember what issues she was facing or whether she was taking her drugs appropriately. When she’d finish with the appointment, we’d ask her what the doctor said. “He said I was great,” she would reply – even though we could tell that her physical health had deteriorated from the previous appointment. I finally was able to convince Mom to allow me to join her in the appointments, although she wasn’t too keen about Dad coming in since she was exhibiting paranoia. I was able to take notes, ask questions and learn of changes in medications, and therefore gently remind Mom when her short-term memory had her convinced that all was great.
Yet the medical community also has another need - for patients and families to respect their limited time and knowledge. Keynote speaker Dr. Nancy Leslie of The Texas Brain and Spine Institute provided a good example: if the physician is an urologist, the patient and family shouldn’t ask about blood pressure medications. This makes a lot of sense, yet we often assume that the patient’s favorite doctor (in my mom’s case, her pulmonologist) has all the answers, when that may not be the case.
Community members also are a group of stakeholders who have specific needs in relation to cognitive impairment. Community members may not have a strong understanding of what cognitive impairment means for a person. In these cases, the community member may actually fear interacting with the person and go out of their way to avoid any contact. And even when they do have a basic understanding of cognitive impairment, they may need to have specific ways they can provide assistance to the person. In addition, Dr. Leslie suggested that this group also needs to be able to establish boundaries of what assistance they can provide and when they are available. She explained, “If a person agrees to do something once – like taking the person who is cognitively impaired to the doctor – will there be an expectation that the community member will always have to do that?” Furthermore, police and other safety officials need to be aware of issues with cognitive impairment and dementia so they can make informed decisions when encountering people who may have these medical issues.
Thinking about the needs of these various stakeholders is enlightening. HealthCentral’s community of people with cognitive impairment, caregivers and medical professionals can use this information in various ways – to be better prepared for medical appointments, to effectively educate community members, and to build a support system that understands and is appropriately engaged in providing assistance to people with dementia and their families.