Medicine and Health Sciences Commons^™

Exploring The Lived Experiences Of Daughters/ Daughters-In-Law Providing Primary Informal Care To Their Mothers/ Mothers-In-Law With Dementia, Sarah Macfarlane

Theses and Dissertations (Comprehensive)

Abstract

Objective

As the senior population in Canada rises, more middle aged residents of Canada will find themselves taking on a caregiving role, often times for a parent with dementia. This research examines the lived experiences of daughters/daughters-in-law providing primary informal care to their mothers/mothers-in-law with dementia in order to understand the motivations, effects, and transitions within caregiving relationships.

Methods

Phenomenology was the theoretical orientation used to guide this research and captured individuals’ lived experiences. Background questionnaires were administered initially, followed by one-on-one semi-structured interviews which were transcribed verbatim upon completion for data analysis. Field notes, member checks, and triangulation …

A Resident-Centered Dementia Care Staff Education Project To Reduce Challenging Behaviors At A Long-Term Care Facility, Margaret Huryk

Seton Hall University DNP Final Projects

Frequent use of antipsychotic medication (APM) for behavioral and psychological symptoms of dementia (BPSD) persists at high levels in long- term care (LTC) facilities despite extensive evidence of modest clinical benefits, serious adverse effects, public health advisories and a national initiative to improve dementia care. There is a gap between best-practice evidence and actual clinical practice related to pharmacological and nonpharmacological care for persons with dementia (PWD) and BPSD and/or neuropsychiatric symptoms (NPS) of dementia. The literature shows that clinicians often ignore FDA (Food and Drug Administration) warnings, CMS (the Centers for Medicare and Medicaid Services) initiatives and expert opinion …

Self-Reported Sleep Apnea And Dementia Risk: Findings From The Prevention Of Alzheimer's Disease With Vitamin E And Selenium Trial, Xiuhua Ding, Richard J. Kryscio, Joshua Turner, Gregory A. Jicha, Gregory E. Cooper, Allison M. Caban-Holt, Frederick A. Schmitt, Erin L. Abner

Sanders-Brown Center on Aging Faculty Publications

OBJECTIVES: To investigate the association between baseline sleep apnea and risk of incident dementia in the Prevention of Alzheimer's Disease with Vitamin E and Selenium (PREADViSE) study and to explore whether the association depends on apolipoprotein E (APOE) ɛ4 allele status.

DESIGN: Secondary analysis based on data collected during PREADViSE.

SETTING: Participants were assessed at 128 local clinical study sites during the clinical trial phase and later were followed by telephone from a centralized location.

PARTICIPANTS: Men enrolled in PREADViSE (without dementia or other active neurological conditions that affect cognition such as major psychiatric disorders, including depression; N = …

The Association Of Nurses’ Assessment And Certainty To Pain Management And Outcomes For Nursing Home Residents In Jordan, Mohammad Jamil Rababa

Theses and Dissertations

Despite advances in dementia care Pain in people with dementia is still under recognized, underestimated, and undertreated because of poor assessment, poor treatment, and factors relating to nurses’ critical thinking and decision-making skills. Unrelieved pain leads to many serious negative health outcomes in people with dementia. The purpose of the study was to examine temporally based relationships between change in behavior, the nurses’ level of certainty regarding pain, assessment scope and outcomes of pain and agitation. Relationship between severity of dementia, comorbid burden, ability to verbally self-report symptoms and patient outcomes of pain and agitation was also investigated.

A Convenient …

Why Didn’T I Know? Perspectives From Adult Children Of Elderly Parents With Dementia, Debbie Conner, Julie Postma, Catherine Van Son

All Faculty and Staff Scholarship

Purpose: Approximately 27 million adults are living with undiagnosed dementia worldwide. The purpose of this study was to learn about the experiences of adult children of elderly parents who were ultimately diagnosed with dementia.

Data sources: A descriptive qualitative design was used for identifying if there were prodromal signs or symptoms that preceded the more commonly known warning signs of dementia. Twelve, 60-min interviews were conducted over the telephone.

Conclusions: The overarching theme was: “Why didn't I know?” Subthemes were “We ignored it because we didn't want it to be,” “We thought it was grief,” and “They wouldn't diagnose dementia.” …

Hidden Markov Chain Analysis: Impact Of Misclassification On Effect Of Covariates In Disease Progression And Regression, Haritha Polisetti

USF Tampa Graduate Theses and Dissertations

Most of the chronic diseases have a well-known natural staging system through which the disease progression is interpreted. It is well established that the transition rates from one stage of disease to other stage can be modeled by multi state Markov models. But, it is also well known that the screening systems used to diagnose disease states may subject to error some times. In this study, a simulation study is conducted to illustrate the importance of addressing for misclassification in multi-state Markov models by evaluating and comparing the estimates for the disease progression Markov model with misclassification opposed to disease …

In The Information Age, Do Dementia Caregivers Get The Information They Need? Semi-Structured Interviews To Determine Informal Caregivers’ Education Needs, Barriers, And Preferences, Kendra Peterson, Howard Hahn, Amber J. Lee, Catherine A. Madison, Alireza Atri

Dartmouth Scholarship

Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes

The Lived Palliative Care Experiences Of Community-Dwelling Older Adults With Dementia In South Western Ontario, Kristina M. Kokorelias

Electronic Thesis and Dissertation Repository

Palliative care is often suggested for individuals with dementia, yet there remains great uncertainty surrounding best delivery of care to individuals wishing to die at home. The aim of this phenomenological study was to understand the experiences of both individuals with dementia who receive palliative care in the community, and their informal family caregivers. Hermeneutic thematic analysis of semi-structured interviews from ten participant dyads revealed key themes. The themes for older adults with dementia were: belonging at home and acceptance of terminal illness; the themes for informal caregivers were: impact of dementia, double strain and home as a source of …

Blood-Tissue Barriers And Autoantibodies In Neurodegenerative Disease Pathogenesis: An Approach To Diagnostics And Disease Mechanism, Eric Luria Goldwaser

Graduate School of Biomedical Sciences Theses and Dissertations

Brain homeostasis can be affected in a number of ways that lead to gross anatomical, cellular, and molecular disturbances giving rise to diseases like Alzheimer’s disease (AD) and related dementias. Unfortunately, the mechanistic pathoetiology of AD’s hallmark features of cerebral amyloid plaque buildup and neuronal death are still disputed. Using human brain AD sections, immunohistochemistry experiments revealed internalized surface proteins, co-localized to an expanded lysosomal compartment. Other stains for amyloid-β1-42 (Aβ42) and various immunoglobulin (Ig) species displayed them leaking out of the cerebrovasculature through a dysfunctional blood-brain barrier (BBB), binding to neurons in the vicinity, and localizing to intracellular vesicles …

Hearing And Vision Screening Tools For Long-Term Care Residents With Dementia: Protocol For A Scoping Review, Kate Dupuis, Katherine S. Mcgilton, Fiona Höbler, Jennifer Campos, Tammy Labreche, Dawn M. Guthrie, Jonathan Jarry, Gurjit Singh, Walter Wittich

Publications and Scholarship

Introduction: Hearing and vision loss among longterm care (LTC) residents with dementia frequently goes unnoticed and untreated. Despite negative consequences for these residents, there is little information available about their sensory abilities and care assessments and practices seldom take these abilities or accessibility needs into account. Without adequate knowledge regarding such sensory loss, it is difficult for LTC staff to determine the level of an individual’s residual basic competence for communication and independent functioning. We will conduct a scoping review to identify the screening measures used in research and clinical contexts that test hearing and vision in adults aged over …

When Actions Speak Louder Than Words: Extending The Reach Of Qualitative Data Collecting, Justine M. Mcgovern

Publications and Research

Through the lens of a study exploring dementia care partnering, the purpose of this methods article is to focus on the role of artifacts and embodied data in data collection. In addition, it illustrates how to use a range of data collecting methods. The article identifies benefits of additional data collecting methods to research and care. These include the need to expand data collecting methods beyond spoken word, integrate a range of data collecting approaches into research courses across disciplines, increase support of qualitative research, and advocate for greater inclusivity in research. Data collecting approaches can also have implications for …

Addressing The Ethical, Legal, And Social Issues Raised By Voting By Persons With Dementia, Jason H. Karlawish, Richard J. Bonnie, Paul S. Appelbaum, Constantine Lyketsos, Bryan James, David Knopman, Christopher Patusky, Rosalie A. Kane, Pamela S. Karlan

Bryan G Kane MD

This article addresses an emerging policy problem in the United States participation in the electoral process by citizens with dementia. At present, health care professionals, family caregivers, and long-term care staff lack adequate guidance to decide whether individuals with dementia should be precluded from or assisted in casting a ballot. Voting by persons with dementia raises a series of important questions about the autonomy of individuals with dementia, the integrity of the electoral process, and the prevention of fraud. Three subsidiary issues warrant special attention: development of a method to assess capacity to vote; identification of appropriate kinds of assistance …

Hearing Aid Use And Cognitive Function: A Systematic Review, Hershel Korngut

Dissertations, Theses, and Capstone Projects

This systematic review analyzed the research relating the use of hearing aids to cognitive function. Hearing aid use was examined to see if wearing hearing aids improves cognitive function, if the length of time hearing aids are worn impacts cognitive ability, if the type of hearing aid used has any impact on cognitive function, and if hearing aid use slows down cognitive decline. Ten studies met the criteria for this review. An analysis of the research revealed some evidence to support wearing hearing aids improves cognitive function, however, there is substantial evidence that shows no impact between wearing hearing aids …

Music Therapy In Patients With Dementia And Behavioral Disturbance On An Inpatient Psychiatry Unit: Results From A Pilot Randomized Controlled Study., Joanna Thornley, Hussein Hirjee, Akshya Vasudev

Psychiatry Publications

The prevalence of dementia continues to grow worldwide due to an aging population and is projected to affect 65.7 million people by 2030 (World Health Organization, 2012). Behavioral and psychological symptoms of dementia (BPSD), including agitation, anxiety, aggression, depression, and psychosis, can occur in as much as 80% of the affected population, frequently necessitating psychiatric admission. Traditionally BPSD have been treated using pharmacological approaches. However, such medications could have serious adverse effects and additionally have limited efficacy in reducing such symptoms (Ballard et al., 2009).

Impact Of Garden Spaces On Dementia Residents: Translating Evidence-Based Research Into Clinical Practice, Angela Ko, Jenna Williams

School of Occupational Therapy Master's Capstone Projects (2016-2021)

The research addressed the following focused question: “Do garden spaces decrease the incidence of behaviors such as combativeness and agitation, psychiatric medication use, depression, falls, cognitive decline, and sleep disturbance in clients with dementia in a residential facility?” The research team collaborated with staff at a skilled nursing facility in an urban area of the Pacific Northwest. Appraisal of existing research revealed multiple potential benefits of residents’ with dementia utilizing garden spaces for wandering and/or therapeutic activities. Based on these findings, the research team recommended implementation of an on-site garden. To support the implementation of these findings, the research team …

Staff Interactions And Affect In Persons With Dementia: An Observational Study Of A Memory Care Unit, Keirstin V. Meyer

All Graduate Theses and Dissertations, Spring 1920 to Summer 2023

It is estimated that the number of people in the United States living with dementia in 2015 will nearly triple by the year 2050. With no cure for dementia, we are faced with providing care in a way that maximizes well-being. The majority of prior research focused on the best ways to reduce behavioral problems and mood disorders, such as depression and anxiety. The objective of this study was to increase knowledge about the social influences on well-being in persons with dementia, particularly from staff in residential memory care units. This study found that the most common interaction type from …

Evaluating The Message Communication Strategies In Dementia Training For Use With Community-Based Aged Care Staff Working With People With Dementia: A Controlled Pretest-Post-Test Study, Erin R. Conway, Helen Chenery

Helen Chenery

Aims and Objectives:

The study aims to evaluate the effects of a communication skills training programme on community aged care staff's knowledge of communication support in dementia and on staff's care experience.

Background:

Dementia can lead to impairments in communication. Therefore, quality community-based dementia care requires that staff be skilled communicators, equipped to facilitate interactions with people with dementia. The current investigation evaluated the effectiveness of the MESSAGE Communication Strategies in Dementia for Care Staff training programme with respect to knowledge of communication support and the staff/caregiver experience.

Design:

A multi-centre controlled pretest/post-test design with randomised cohort allocation was used. …

Dementia Care: Confronting Myths In Clinical Management, Shirley M. Neitch Md, Charles Meadows Md, Eva Patton-Tackett Md, Kevin W. Yingling Md

Internal Medicine

Enormous challenges of this pervasive life-changing condition. Seeking help, often grasping at straws, victims, and their care providers are confronted with misinformation and myths when they search the internet or other sources. When Persons with Dementia (PWD) and their caregivers believe and/or act on false information, proper treatment may be delayed, and ultimately damage can be done. In this paper, we review commonly misunderstood issues encountered in caring for PWD. Our goal is to equip Primary Care Practitioners (PCPs) with accurate information to share with patients and families, to improve the outcomes of PWD to the greatest extent possible.

While …

Factors Associated With Unmet Needs Among African-American Dementia Care Providers, P. J. Desin, Allison M. Caban-Holt, Erin L. Abner, Linda J. Van Eldik, Frederick A. Schmitt

Sanders-Brown Center on Aging Faculty Publications

Racial and ethnic minorities currently comprise 20% of the U.S. population; in 2050, this figure is expected to rise to 42%. As a result, Alzheimer’s disease (AD), the 5th leading cause of death for people aged 65 and older, is likely to increase in these groups. Most dementia caregiving for these populations comes from family and friends, especially among families with lower socioeconomic status. A convenience sample of 30 African-American dementia caregivers was interviewed to determine unmet needs. Participants expressed a limited desire for formal services, such as support groups, legal advice, case management, and homemaker services. Instead, commonly expressed …

The Role Of Capillaries In The Lesser Ailments Of Old Age And In Alzheimer's Disease And Vascular Dementia: The Potential Of Pro-Therapeutic Angiogenesis, Charles T. Ambrose

Microbiology, Immunology, and Molecular Genetics Faculty Publications

Apart from chronic diseases (arthritis, diabetes, etc.), old age is generally characterized by three lesser ailments: muscle weakness, minor memory lapses, and cold intolerance. This trio of complaints may have a common, underlying cause, namely, the age-associated reduced microcirculation in muscles, brain, skin, and elsewhere in the body. The Angiogenesis Hypothesis proposes that old age is in part a deficiency disease due to the decline in angiogenic (AG) factors, resulting in a reduced capillary density (CD) throughout the body. Over fifty published papers document waning levels of AG factors and/or decreased CD in various organ systems of aged animals and …

Driving In Early-Stage Alzheimer’S Disease: An Integrative Review Of The Literature, Rebecca L. Davis, Jennifer M. Ohman

Peer Reviewed Articles

One of the most difficult decisions for individuals with Alzheimer’s disease (AD) is when to stop driving. Because driving is a fundamental activity linked to socialization, independent functioning, and wellbeing, making the decision to stop driving is not easy. Cognitive decline in older adults can lead to getting lost while driving, difficulty detecting and avoiding hazards, as well as increased errors while driving due to compromised judgment and difficulty in making decisions. The purpose of the current literature review was to synthesize evidence regarding how individuals with early-stage AD, their families, and providers make determinations about driving safety, interventions to …

Raising Awareness Of Research Evidence Among Health Professionals Delivering Dementia Care: Are Knowledge Translation Workshops Useful?, Belinda J. Goodenough, Richard Fleming, Michael Young, Kim Burns, Cindy Jones, Fallon M. Forbes

Faculty of Science, Medicine and Health - Papers: part A

Providing information about the latest research via educational sessions to health professionals caring for people with dementia may be insufficient to drive change. This project explored self-reported impacts on practice change of adding information about knowledge translation (KT) to a national dementia education program. Six national workshop days were held. Each provided the option of participating in a Principles of KT and innovation implementation seminar in addition to a clinical topic update (sexualities and dementia, or managing behavioral and psychological symptoms of dementia). Six months postworkshop, 321 participants were invited to complete a research utilization survey. Seventy-five responded. KT seminar …

Effectiveness Of A Service Learning Model With Allied Health Assistant Students In Aged Care, D Zulch, R Saunders, J Peters, J Quinlivan

Medical Papers and Journal Articles

This mixed methods audit explores the impact of a student learning activity involving service learning. As part of a vocational course in the Academy of Health Sciences at the West Coast Institute, Allied Health Assistant (AHA) students participated in a service learning program focused on work-based learning in residential aged care. Students delivered a therapy program for residents at the facility. Students completed validated evaluation questionnaires on conclusion of study. Of 121 students completing the audit, 91% thought the experience challenged their way of thinking. Only 2% disagreed with this concept. A majority of students (93%) reported the experience interesting …

Time Of Day And Performance On Cognitive Tests In Patients With Mild Dementia, Upinder Singh, Mandeep Gill, Rebecca Rice, Fallon Dimaano, Andrea Warburton, Michael R. Wells

College of Osteopathic Medicine (TUN) Publications and Research

Background

Cognitive screening for elderly patients with mild dementia is typically conducted in the morning under the impression that testing at this time will optimize performance and cooperation of patients. This study was conducted to determine if the time of day in which several cognitive screening tests would be normally given could significantly affect test performance in patients with mild dementia and normal control subjects.

Methods

Fifty nursing home residents with mild to moderate dementia and twenty normal control subjects were given three commonly used cognitive tests in two separate sessions (morning and afternoon) with a two week interval between …

Finding Chemopreventatives To Reduce Amyloid Beta In Yeast, Ian Macreadie, Costa Arvanitis, Prashant Bharadwaj

Research outputs 2014 to 2021

Alzheimer's disease (AD) is the most common form of age-related dementia with the latest report (WorldAlzheimerReport, 2015) showing 46.8 million people are currently affected by dementia. That number is expected to double every 20 years unless there is effective therapeutic intervention.

Cerebrovascular Risk Factors, Arteriolar Sclerosis, And Cognitive Decline In The Kentucky Appalachian “Stroke-Belt”, Omar M. Al-Janabi

Theses and Dissertations--Medical Sciences

The relationship between cerebrovascular disease (CVD) risk factors and cognitive impairment or dementia has been widely studied with significant variability in findings between groups. We hypothesized that chronic small vessel injury in the form of arteriolar sclerosis, measured quantitatively using MRI to measure total white matter hyperintensity (WMH) volumes, would identify specific association of CVD risk factors and patterns of cognitive decline, associated with mild cognitive impairment of the cerebrovascular type, that represent the core features of vascular cognitive impairment in our cohort.

A Cross-sectional analysis of clinical and quantitative MRI data on 114 subjects with normal cognitive function (n=52) …

Modeling Dementia Risk, Cognitive Change, Predictive Rules In Longitudinal Studies, Xiuhua Ding

Theses and Dissertations--Epidemiology and Biostatistics

Dementia is increasing recognized as a major problem to public health worldwide. Prevention and treatment strategies are in critical need. Nowadays, research for dementia usually featured as complex longitudinal studies, which provide extensive information and also propose challenge to statistical methodology. The purpose of this dissertation research was to apply statistical methodology in the field of dementia to strengthen the understanding of dementia from three perspectives: 1) Application of statistical methodology to investigate the association between potential risk factors and incident dementia. 2) Application of statistical methodology to analyze changes over time, or trajectory, in cognitive tests and symptoms. 3) …

Role Of Community Participation In Improving Quality Of Life In Clients With Dementia And Their Caregivers, Mridula Dhamija

Online Theses and Dissertations

Aim: The purpose of this study was to investigate the effects on quality of life for clients with dementia and their caregivers by participating in a community program, the Memory Café.

Method: In this qualitative, cross case study, the Marwit Meser Caregiver Grief Inventory (MM-CGI) was given to caregiver. Data collection was done by interviewing the participants; there was a main question with follow- up questions as needed. All the interviews were audiotaped and transcribed followed by primary and secondary coding. Shortlisting of categories resulted in emergence of themes which were common across cases and unique to each case.

Results: …

The Effects Of Testosterone Supplementation On Cognitive Functioning In Older Men, Eka Wahjoepramono, Prita Asih, Vilia Aniwiyanti, Kevin Taddei, Satvinder Dhaliwal, Stephanie Fuller, Jonathan Foster, Malcolm Carruthers, Giuseppe Verdile, Hamid R. Sohrabi, Ralph Martins

Research outputs 2014 to 2021

Reduction in testosterone levels in men during aging is associated with cognitive decline and risk of dementia. Animal studies have shown benefits for testosterone supplementation in improving cognition and reducing Alzheimer’s disease pathology. In a randomized, placebo-controlled, crossover study of men with subjective memory complaint and low testosterone levels, we investigated whether testosterone treatment significantly improved performance on various measures of cognitive functioning. Forty-four men were administered a battery of neuropsychological tests to establish the baseline prior to being randomly divided into two groups. The first group (Group A) received 24 weeks of testosterone treatment (T treatment) followed by 4 …

Dementia Caregive Module And Pamphlet, Shawen Denise Ransby

Walden Dissertations and Doctoral Studies

Dementia care is an immediate and growing issue that affects everyone. People are living longer increasing the likelihood that they may be diagnosed with dementia. Friends and family are become caregivers but are often unprepared for the role. The purpose of this project was to develop a 15-minute dementia care module to assist caregivers with the home care of dementia patients. A pamphlet was created to reinforce the module information and to provide a quick reference for dementia support. The self-efficacy theory, along with the review of best practice guidelines and evidence from literature, informed the development of the module. …