Gaps in biomedical research in frontotemporal dementia: A call for diversity and disparities focused research.

Frontotemporal dementia (FTD) is one of the leading causes of young-onset dementia before age 65, typically manifesting as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). Although FTD affects all populations across the globe, knowledge regarding the pathophysiology and genetics derives primarily from studies conducted in North America and Western Europe. Globally, biomedical research for FTD is hindered by variable access to diagnosis, discussed in this group's earlier article, and by reduced access to expertise, funding, and infrastructure.

An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings.

Introduction: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention.

Methods: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 - systematic review to identify measures; Stage 2 - consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 - e-Delphi consensus with 57 researchers.

Managing medications among individuals with mild cognitive impairment and dementia: Patient-caregiver perspectives.

Background: With changing cognitive abilities, individuals with mild cognitive impairment (MCI) and dementia face challenges in successfully managing multidrug regimens. We sought to understand how individuals with MCI or dementia and their family caregivers manage multidrug regimens and better understand patient-to-caregiver transitions in medication management responsibilities.

Methods: We conducted qualitative interviews among patient-caregiver dyads.

A Process Evaluation of Developing Older Adult Research Advisory Boards in Long-term Care Settings.

Background: Enhancing the capacity of researchers, providers and older adults to collaborate in research is critical for promoting relevant, useful research findings.

Objectives: The Sages in Every Setting project aimed to disseminate a flexible model for developing research advisory boards (RABs) comprised of older adults receiving long-term services and supports (LTSS) via partnerships between academic researchers and LTSS providers.

Methods: Process evaluation assessed the feasibility of using resources to develop RABs.

Communication Bridge™-2 (CB2): an NIH Stage 2 randomized control trial of a speech-language intervention for communication impairments in individuals with mild to moderate primary progressive aphasia.

Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA.

Stressors and Acceptability of Services Among Black Caregivers of Persons With Memory Problems.

The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children.

Results of a Randomized Trial Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous Psychoeducation Program for Family Caregivers of Persons Living with Dementia.

Background And Objectives: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving.

Research Design And Methods: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons.

Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT.

Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted.

SPIRIT advance care planning intervention in early stage dementias: An NIH stage I behavioral intervention development trial.

Unlabelled: People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote).

Testing Tele-Savvy: Protocol for a randomized controlled trial.

Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy.

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners.

Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer's dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility.

The Memory Ensemble: improvising connections among performance, disability, and ageing.

There is a recognised need for research that illuminates mutually beneficial connections among performance, ageing, disability theory, and praxis. One such project is the Memory Ensemble an improvisational theatre intervention for persons with early stage Alzheimer's disease and related dementias (ADRD). This case study explores how the programme productively disrupts and expands notions of all three: performance, disability, and ageing.

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.

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 person's strengths and weaknesses as determined by formal neurocognitive and psychosocial evaluations. Careful attention is given to the stage of illness and an individual's stage in life, to connecting families with services that target an individual's cognitive and behavioral symptoms, and to providing education and emotional support specific to symptoms, clinical diagnosis, and prognosis.

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.

"I know what CBPR is, now what do i do?": Community perspectives on CBPR capacity building.

Background: Community-based participatory research (CBPR) offers a promising approach for combating health disparities. CBPR capacity must be developed among academics and communities. Most published CBPR capacity development work focuses on general guidance or individual partnership development.

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.

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

Background: As 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.

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.

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 Alzheimer's Disease Center in collaboration with Coalition of Limited English Speaking Elderly and Alzheimer's 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 Alzheimer's 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.

Organizing a Series of Education and Support Conferences for Caregivers of Individuals With Frontotemporal Dementia and Primary Progressive Aphasia.

Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with average age of onset in the 40s to 60s, and cause initial degeneration in behavior and language, respectively. Caregivers of diagnosed individuals report that there is little information available about these diseases. In response to this need, we designed and implemented a 3-part series of conferences aimed to educate and provide support to these caregivers.