Darby Morhardt

‘Trying to Continue to Do as Much as They Can Do’: Theoretical insights regarding continuity and meaning making in the face of dementia

Face-to-face interviews were conducted with six individuals in the early stages of a dementia. Interviews were initiated to explore the day-to-day experiences of dementia. The commonality that emerged across the interviews was participants’ desire to maintain continuity with their previous way of life while coping with dementia-necessitated changes. We conceptualized this commonality in terms of Atchley’s (1989) articulation of continuity theory and Park and Folkman’s (1997) framework of meaning making. This research highlights how, despite their impairment, individuals with dementia not only are able but strive to maintain continuity and to make meaning of their situations. The results show that it is possible to gain insight from those in the early stages of dementia; the underlying practical and clinical implication is the importance of encouraging the maintenance of personhood by listening to the desires and concerns of those with dementia.

Benefits of Mindfulness Training for Patients With Progressive Cognitive Decline and Their Caregivers

New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer’s disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre–post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it can be delivered at low cost to combined groups, and it is worthy of further investigation.

Negotiating family relationships: Dementia care as a midlife developmental task

This article is based on interviews with a 44-year-old woman who exemplified the concepts of filial anxiety and filial maturity. These two concepts were initially defined by Blenkner in 1965, but more recently they were developed into a conceptual framework for understanding adult child caregiving responsibilities. The process of becoming “filially mature” is one of grieving, mourning, and letting go of previously secure rules and regulations about relationships with parents. This adds to a previously mandated imperative of developmental tasks that one must face at midlife (e.g. dealing with mortality). Augmenting these midlife tasks, parent care can be defined as a positive, growth-enhancing experience, versus the burden-stress model that has previously characterized this experience.

Medical student education program in Alzheimer's disease: The PAIRS Program

BackgroundAs life expectancy increases, dementia incidence will also increase, creating a greater need for physicians well-trained to provide integrated geriatric care. However, research suggests medical students have limited knowledge or interest in pursuing geriatric or dementia care. The purpose of this study is to evaluate the PAIRS Program and its effectiveness in enhancing medical education as a service-learning activity and replication model for the Buddy ProgramTM.MethodsBetween 2007 and 2011, four consecutive classes of first year Boston University School of Medicine students (n = 45; 24 ± 3 years, 58% female, 53% White) participated in a year-long program in which they were paired with a patient with early-stage Alzheimer’s disease (AD). Assessments included pre- and post-program dementia knowledge tests and a post-program reflective essay.ResultsProgram completion was 100% (n = 45). A paired-sample t-test revealed a modest improvement in dementia knowledge post-program (p < 0.001). Using qualitative coding methods, 12 overarching themes emerged from the students’ reflective essays, such as observing care partner burden, reporting a human side to AD, reporting experiences from the program that will impact future clinical practice, and obtaining a greater understanding of AD.ConclusionsQuantitative and qualitative findings suggest that the PAIRS Program can enhance the acquisition of knowledge, skills, and positive attitudes regarding geriatric healthcare in future generations of physicians, a skill set that is becoming increasingly relevant in light of the rapidly aging population. Furthermore, results suggest that The Buddy ProgramTM model can be successfully replicated.

Educating medical students on Alzheimer's disease and related disorders: An overview of the Northwestern University Buddy Program

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Caring for Children of Parents With Frontotemporal Degeneration: A Report of the AFTD Task Force on Families With Children

The Association for Frontotemporal Degeneration (AFTD) organized a 7-person Task Force on Families With Children to explore the concerns of families when a parent of young children or teens is diagnosed with FTD. This report summarizes the findings of the task force and highlights the need for additional attention to this topic. The task force conducted a review of related literature and existing resources and compiled issues identified by spouses/partners, teens, and adult children within an affected family. The project confirmed a significant lack of information and support for parents caring for a spouse with FTD and for their children. Recommendations include developing resources and strategies that promote comprehensive family support, including those that build resiliency in the well parent and the children, and strengthen the changing family unit. Avenues for additional research in this area of need in the FTD community are suggested.

Accessing Community-Based and Long-Term Care Services: Challenges Facing Persons with Frontotemporal Dementia and Their Families

There are several barriers to accessing services for persons with frontotemporal dementia (FTD), and few studies have examined service needs and satisfaction with services for family caregivers of persons with FTD. Persons with FTD and their families have reported consistent difficulties in their attempts to access care and support. These are: (1) difficulty obtaining a diagnosis; (2) financial concerns due to loss of employment, job-related income; (3) problems accessing social security disability insurance; and (4) lack of adequate community-based and long-term care services and resources. Successful care practices such as use of an interdisciplinary team and helpful care models such as person-centered care and the antecedent–behavior–consequence method are described. Further investigation and research are needed to understand best care strategies for persons with FTD.

The CARE Pathway Model for Dementia Psychosocial and Rehabilitative Strategies for Care in Young-Onset Dementias

The goal of the Care Pathway Model for Dementia (CARE-D) is to improve quality of life and daily functioning both for individuals diagnosed with dementia and for their families or other caregivers. This is accomplished by developing individualized recommendations focused on a persons strengths and weaknesses as determined by formal neurocognitive and psychosocial evaluations. Careful attention is given to the stage of illness and an individuals stage in life, to connecting families with services that target an individuals cognitive and behavioral symptoms, and to providing education and emotional support specific to symptoms, clinical diagnosis, and prognosis.

Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities.

Limited data exist on how members of different cultures understand dementia. The Northwestern Cognitive Neurology and Alzheimers Disease Center in collaboration with Coalition of Limited English Speaking Elderly and Alzheimers Association-Greater Illinois Chapter collaborated to raise awareness in 5 limited English proficiency (LEP) communities (Assyrian, Arabic, Bosnian, Hindi, and Urdu) during 2005 to 2008 through a grant from the Administration on Aging Alzheimers Disease Demonstration Grants to States. After the second year of the program, 267 individuals with cognitive impairment were identified with cognitive impairment and enrolled; however, only 13% of those sought a medical evaluation to obtain a diagnosis or further help for their memory problems. This project sought to: (1) understand how these LEP community groups conceptualize dementia and (2) understand reasons LEP communities sought or did not seek a diagnosis. Using a community-based participatory research approach, ethnic community leaders conducted 48 interviews in a convenience sample of persons enrolled in the previous Administration on Aging demonstration grant. These interviews were conducted with family members of identified persons with dementia in their native language. Interview notes were translated and subjected to thematic analysis. The majority view memory loss as explainable and normative—due to aging, reaction to medication or trauma experienced by war, family problems, or the immigration experience. This conceptualization and the perception that a doctor cannot help influenced whether they sought an evaluation. Those who saw a doctor were looking for medical treatment and help with difficult behaviors. Experience in the doctors office was variable. Discussion of analysis with ethnic communities revealed the significance of stigma in the data gathering. Continued community-based participatory research approaches with LEP communities could further highlight needs for culturally relevant education and intervention.

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups

Introduction: Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. Methods: African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. Results: Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy. Discussion: The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.