Information for Patients and Families
Hope in Dementia
While we don't have a cure for Alzheimer's or dementia, there is a lot we can do to help.
There is a stigma around dementia, mainly due to a lack of public awareness and understanding of the disease. This stigma can prevent individuals from seeing a medical provider about their symptoms, as well as cause misconceptions and affect well-being and quality of life for those who have dementia along with their care partners and family members. Increased awareness and understanding of dementia can help to lessen the stigma and improve quality of care for those who have been diagnosed. Living with dementia is manageable, and there is much that can be done to empower patients and provide them and their families with hope.
First is to understand your diagnosis. Dementia is a loss of previously attained abilities in daily life, impacting functional independence. There are 300 types of dementia, with Alzheimer's Disease being the most common type. No two patients with Alzheimer's present the same symptoms as someone else. Alzheimer's itself is a spectrum, and life doesn't stop after diagnosis.
Life can take an unexpected turn when a person learns they have dementia. It is essential to gather and process as much information as possible about your diagnosis. Being informed about your diagnosis can help you explore all your treatment options and help yourself, and your family members adjust to and come to terms with your diagnosis.
Dementia is a disease that impacts each individual differently and should be treated as such for each patient. Early and accurate diagnosis matters. There's a lot more to dementia than Alzheimer's, and a lot of cognitive impairment is treatable. Accuracy of diagnosis is easier earlier on and leads to better survival rates. Knowing more about your diagnosis early on can be empowering; one can participate in advance care planning, consider research opportunities, and begin treatment as soon as possible.
Importance of Cultural Inclusion
Clinical trials are research studies on human subjects that aim to evaluate surgical, medical, or behavioral intervention. At the heart of these trials are people, who help to continue the development of new medicines and enhance treatments and the standard of care. These trials affect individuals of all backgrounds and walks of life, and the people actively participating in research studies need to be representative of the whole population. Unfortunately, that is often not the case. According to a 2018 editorial from Scientific American, “Nearly 40 percent of Americans belong to a racial or ethnic minority, but the patients who participate in clinical trials for new drugs skew heavily white—in some cases, 80 to 90 percent.”
Diversity is the practice of including or involving individuals from a range of different backgrounds, including different socioeconomic and ethnic backgrounds, and different genders and sexual orientations. Increasing diversity in research among participants and health care providers will improve treatments and medicine for those from diverse backgrounds, making sure these interventions affect all individuals the same.
Improving cultural inclusion in research is essential to providing accurate and effective treatment. Increasing diversity needs to start at the community level. Many minorities do not participate in research due to concerns of discrimination from medical professionals and decreased access to health care facilities. Establishing trust within the community, maintaining effective communication, and finding solutions to logistical and financial constraints will begin to increase diversity in research over time.
Dr. Pressman's 8 Key Points for Improving Treatment
Dr. Pressman listed eight key points for improving the treatment of individuals with Alzheimer’s Disease in our diverse Colorado community in a recent talk about outreach. These are examples of first steps that can be taken to create a culturally inclusive environment within a research setting:
- Work with community members to understand brain health, early warning signs of dementia and benefits of early detection and diagnosis for person’s with dementia and their caregivers.
- Encourage community members to use effective interventions, best practices, and traditional wellness practices to protect brain health, address, cognitive impairment and support persons with dementia and their caregivers.
- Provide information and tools to help older adults with dementia and their caregivers anticipate and respond to challenges that typically arise during the course of dementia
- Promote engagement among tribal leaders in dementia issues by offering information and education on the basics of cognitive health and impairment the impact of dementia on caregivers and communities, and the role of public health approaches in addressing this priority problem.
- Support collection and use of local data on dementia and caregiving in American Indians and Alaskan Natives (AIAN) communities to plan programs and approaches.
- Promote the inclusion of healthcare quality measures that address both cognitive assessments and the delivery of care to AIANs with dementia
- Educate healthcare and aging services professionals in Indian Country about the signs and symptoms of dementia and about caregiving for persons with dementia.
- Educate healthcare and aging services professionals on the best ways to support families and caregivers of older adults with dementia.