I have a kaleidoscopic view of Alzheimer’s disease with many colors and views changes. My colorful experience reflects various roles I’ve held, including care partner, researcher, senior living administrator, Educator, and volunteer. I have directly and personally witnessed many changes in the delivery of Alzheimer’s services and education over the last thirty years. I have seen much progress in the care of individuals with dementia and their care partners; however, many improvements are still greatly needed.
As a care partner with my mother for 13 years, I struggled with physicians who were specialists in their field of medicine yet not educated in the skills needed to speak with an individual experiencing dementia respectfully. This included having an awareness of community services available and an understanding of the need for supportive services. I also struggled with the general public, including dog groomers, hairdressers, grocery store clerks, bank tellers, and neighbors, who did not understand how to respond to my mother as her dementia worsened. It was apparent none of them had the opportunity to learn how to deal with such customers. My emotional health, physical health, finances, social life, and life in the community were all stretched to the limit as we navigated this challenging time in her life. Given my role, I had access to education on the topic, which enabled me to cope and help assist her.
As a researcher, my dissertation included the opportunity to interview over thirty Alzheimer’s care partners and learn about their experiences and coping process.
Throughout the stages of dealing with the disease, care partners reported numerous effects that impacted their own lives, including loss of social life, loss of employment, and loss of relationships, leading to depression, sadness, distress, frustration, fatigue, and insomnia.
Additionally, some suffered from guilt, headaches, and being short-tempered, along with the many aforementioned outcomes—still, some suffered loss of their own health and even personal financial loss.
Support groups, education, and professional support were cited as the most helpful resources in care partners coping with their Alzheimer’s experience.
Senior Living Administrator
As a senior living administrator overseeing a skilled nursing facility, I observed primary care partners and other family members struggle with medical, financial, and legal issues associated with the disease. Decisions such as when to remove the automobile, move to a higher level of care, and take over management of finances are all aspects that families could benefit from with more education and support resources.
Professional caregivers require intense in-service training, but budgets for this type of education are often slim or non-existent. Education for fellow residents living in senior communities is greatly needed in order to promote understanding and skill development helpful in sharing a facility with neighbors experiencing dementia.
As an educator teaching courses at the university level and community workshops to promote knowledge and understanding of Alzheimer’s, I reinforced for me the need for more dementia education. Most of my students had at least one member of the family, past or present, diagnosed with dementia or struggling with their memory and not yet diagnosed. Business majors, history majors, and art majors will all likely experience the burden of dementia in their clients, students, or families at some point. The university setting presents an opportunity to provide education on the disease, so students are better equipped with the knowledge and skills to handle Alzheimer’s patients.
As a volunteer leader with the Alzheimer’s Association, serving as Chair of the Greater Pennsylvania Chapter, efforts to balance education, research, and service related to the allocation of hard-earned funds is always present. Partnering with private, community, and government agencies is vital to the success and hope of offering more education.
Communities might better support those affected by Alzheimer’s disease and other dementias by providing greater education for the care partners, health care professionals, social service professionals, first responders, legal professionals, and the general public. Equipped with a better understanding of Alzheimer’s and how to care for the many affected by the disease will help enhance the quality of life for these valued members of our society.
Melanie Titzel, Ph.D. is the Ambassador for the LECOM Institute for Successful Aging, which, among other roles, consists of her serving as Educator to staff and residents in the areas of Alzheimer’s, chronic disease, and diabetes self-management, Grief and Support Committee Leader, and Facilitator of Operations. During her 22-year career, Titzel has served in numerous capacities of senior care and now helps facilitate LECOM’s continuum of care services that serve the senior population of Northwest Pennsylvania. Contact LECOM to learn more about their services that support Alzheimer’s patients and their families by phone at 814-868-3883 or online at LECOMisAging.com.