Anxiety and Related Symptoms in Older Persons With Dementia: Directions for Practice

Anxiety disorders and related symptoms commonly occur in older people with cognitive impairment or dementia, significantly worsening functioning and reducing quality of life. This review of the literature outlines the extent of the problem, and focuses on current best practices in psychosocial interventions anxiety in persons with dementia. Discussion follows on promising nonpharmacological interventions that are recommended for further consideration and future research.     

Alzheimer's disease and related dementias

The number of individuals with Alzheimer's disease or a related dementia is growing at a staggering rate. Thus, it is essential that social workers in geriatric settings are knowledgeable about this disorder and the appropriate interventions to use at all stages of the disease. The purpose of this article is to examine the types of non-pharmacological, psychosocial treatments that are used to manage the behavioral manifestations and changes in the mood of individuals with Alzheimer's disease or a related dementia. While great strides have been made in pharmacological treatments of Alzheimer's disease, less attention has been given to the types of psychosocial interventions that are readily employed in community-based and long-term care settings to assist in the care of these individuals. This article provides an overview of psychosocial interventions, as well as identifies the direction for future evidence-based treatment studies, for individuals with Alzheimer's disease and related dementia.     

The Couples Life Story Approach: A Dyadic Intervention for Dementia

This article describes an approach for working with individuals who have dementia, along with their spouses or partners. The 5-week intervention focuses on helping couples communicate, reminisce about the story of their relationship, find photographs and mementoes from their past, and develop a book that incorporates these mementoes. This clinical approach highlights the strengths and the resilience of couples and adds to the limited repertoire of dyadic interventions for dementia care which are currently available. Preliminary findings from 24 couples are presented, including the intervention's feasibility and acceptability.     

What Is Known About Dementia Care Recipient Violence and Aggression Against Caregivers?

Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior.     

Preparedness of representatives for people with dementia in a self-directed program

ABSTRACT

Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities. They represented participants with moderate to advanced dementia and ≥ two additional chronic illnesses. Overall preparedness scores were in the pretty well to very well prepared range, with variation across dimensions and between individuals. Preparedness varied according to what has to be done day-to-day in dynamic or unpredictable situations, gauging decisional capacity, anticipating changing needs, ensuring safety, supporting a dementia-capable care team and negotiation. Stress was related to having a safety net of capable back-up supports and dementia care literacy. Areas of strength, individual variation and particular challenges along the trajectory of representing can guide development of support counselor interventions to provide representatives with tailored training and resources as they enable the benefits of PD for persons with dementia.     

Moving toward Medicare home health coverage for persons with Alzheimer's disease

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.     

Considerations in Care for Individuals with Intellectual Disability with Advanced Dementia

Abstract

A number of physical, psychosocial, or ethical issues related to the care of the individual with advanced dementia are reviewed and related to individuals with intellectual disabilities. The sources used include the published literature and illustrations drawn from personal observations. The author notes that through anticipation and early planning, advanced directives and service planning (which looks to adaptation of services and other care management interventions), can effectively impact care at the end. Areas that need to be addressed include technical information, including a review of and, as appropriate, adaptation of general advanced dementia resources, relief, rest, support, reassurance, receipt of on-going information, participation in planning, a sense of humor, and appreciation. Also noted, are the differences experienced because of the presence of paid staff as carers and residence outside of the family home. It is concluded that, although the goals of quality care is the same for all people with advanced dementia, the process by which to reach these goals often needs further consideration and adaptation for people with intellectual disabilities.     

Moving Toward Medicare Home Health Coverage for Persons with Alzheimer's Disease

ABSTRACT

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.     

Couple Meaning-Making and Dementia: Challenges to the Deficit Model

By combining a relationship- and strengths-based approach, the article suggests that, with the onset of progressive cognitive impairment, verbal, nonverbal, and embodied exchanges can function as meaning-making processes for life-partner co-carers. These exchanges can sustain a sense of relatedness, which has been shown to increase wellbeing. The article identifies gaps in knowledge and practice limitations that result from the deficit approach to dementia research and care that currently dominates the field. Suggestions for future research and the development of interventions are included. In addition, the article challenges theoretical assumptions about meaning-making, arguing for a reexamination of dementia-affected couplehood processes.     

Couple meaning-making and dementia: challenges to the deficit model

By combining a relationship- and strengths-based approach, the article suggests that, with the onset of progressive cognitive impairment, verbal, nonverbal, and embodied exchanges can function as meaning-making processes for life-partner co-carers. These exchanges can sustain a sense of relatedness, which has been shown to increase wellbeing. The article identifies gaps in knowledge and practice limitations that result from the deficit approach to dementia research and care that currently dominates the field. Suggestions for future research and the development of interventions are included. In addition, the article challenges theoretical assumptions about meaning-making, arguing for a reexamination of dementia-affected couplehood processes.     

Learning Experiences of Older Volunteers in a Community-based Social Program for People with Dementia

Abstract

This qualitative study aimed to explore older adults’ perspectives on volunteering in an activity-based social program for community-dwelling people with dementia called Stepping Stones. Semi-structured interviews were individually conducted with eight older adults who had volunteered in Stepping Stones. Interpretative phenomenological analysis was used to analyze interview data. Four themes related to learning experiences of older volunteers in Stepping Stones emerged. These themes include (a) self-growth and confidence in working with people with dementia; (b) understanding dementia, people with dementia, and needed support for people with dementia and their families; (c) desire not to develop dementia, while recognizing that anything can happen in old age; and (d) exercising person-centered approaches and taking on advocacy roles. Findings suggest that older volunteers gain feelings of personal growth and confidence in working with people with dementia, better understanding, and enhanced attitudes toward people with dementia through volunteering in an activity-based social program for people with dementia. Older adults will be able to fill the needs of community programs for people with dementia, while experiencing benefits from volunteering and learning in later life. Further research is needed to examine to what extent having previous dementia experiences make their experiences and learning different.     

Elder abuse and neglect among veterans in Greater Los Angeles: prevalence, types, and intervention outcomes

This study examined the prevalence, types, and intervention outcomes of elder abuse/neglect among a veteran population. A review of medical records of 575 veterans who had received services from the Veteran's Affairs Geriatric Outpatient Clinic in Los Angeles during a three-year period found 31 veterans (5.4%) who had an elder abuse report filed on their behalf. Prevalence of elder abuse/neglect was higher among older (80+) and Caucasian and African American veterans. Eight of 31 victims suffered from more than one type of elder abuse including self-neglect. Financial abuse and self-neglect were the most commonly reported types. Family members were perpetrators in the majority of the cases, excluding self-neglect. However, three-quarters of financial abuse cases were committed by non-family members. Almost one-half of the victims had dementia and eight were clinically depressed. The most common intervention was to move victims from their unsafe home into a nursing home or board and care facility, followed by conservatorship arrangement. These interventions were most frequently used for victims with dementia, and conservatorship was often arranged with another type of intervention, such as a move to a nursing home. Victims who remained at home received conservatorship or outside supportive services or a combination of both. This study calls for more comprehensive and systematic research on elder abuse/neglect at multi-settings in order to generate useful information for prevention and detection of, and effective intervention in elder abuse and neglect in the veteran population.     

Experiences of Caregivers in a Dementia Simulation Program

Abstract

Objectives: Simulation-based training has been used in health care to increase clinical knowledge and skills and understanding the experience of others. There is a lack of research in exploring experiences of caregivers of people with dementia in a dementia simulation program and its potential benefits on caregivers. The purpose of this qualitative study was to explore experiences of caregivers of people with dementia who participated in a dementia simulation program, called Dementia Live?.

Methods: Fourteen caregivers were interviewed after participation in DL, and thematic analysis using NVivo 11 software was used.

Results: Three themes emerged, including: (i) the Dementia Live? as an eye-opening experience; (ii) the perceived benefits of the Dementia Live? on themselves; and (iii) recommendation of the Dementia Live? to other caregivers.

Conclusions: Dementia simulation programs such as the Dementia Live? may help caregivers to have more empathy, understand better about the behaviors and feelings of people with dementia, and to use strategies that can help when working with people with dementia. Further experimental research is needed to examine effectiveness of the dementia simulation program on caregivers and people with dementia.     

The Forgotten: Dementia and the Aging LGBT Community

Although research documenting the experience of lesbian, gay, bisexual, transgendered (LGBT) aging in general is gaining traction, and literature on dementia continues to proliferate, few articles attend to how dementia affects members of the aging LGBT community. This article reviews the current state of knowledge on the experience of dementia for LGBT older adults, and suggests areas for further research. In addition, it aims to promote social work’s engagement with related disciplines and global dementia care. The article’s ultimate goal is to encourage development of care practices tailored to the experiences, expectations and needs of older LGBT individuals affected by dementia.     

Use of Space and Human Rights: Planning Dementia Friendly Settings

Environmental psychology has been a topic of great interest for many researchers in the field of aging and dementia. Thus, several orientations can be identified in the contemporary scientific literature concerning environmental design for people with dementia. In this article, we discuss recent research on environmental design models for people with dementia and propose an approach referring to the concept of use of space and human rights.We use a methodology based on observation of special care units to determine an environmental design framework that should be taken into account when designing residential facilities for people with dementia. Content analysis identified 6 primary dimensions and 13 secondary dimensions relevant to the rights of people with dementia. We then discuss the results according to the related literature in environmental psychology and gerontology in terms of well-being and quality of life.     

The transition to caregiving: the experience of family members embarking on the dementia caregiving career

Although there is an extensive literature on dementia caregiving, research on family members' adjustment to the onset of dementia and on the early stage of caregiving is limited. This article describes a phenomenological study based on twenty semi-structured interviews with spouses and adult daughters of someone with early/mild dementia or mild cognitive impairment (MCI). Participants were asked to describe the earliest changes in the parent or spouse and the changes to their everyday lives and in their relationships brought by cognitive impairment. These family members reported taking on many new responsibilities in a highly interactive caregiving process consisting primarily of decision-making and supervision. Many participants reported experiencing frustration, resentment, grief, and relational deprivation, along with increased protectiveness and tenderness towards the person with dementia. Most of the participants were ambivalent about seeking or accepting help from others and seemed to want to maintain the status quo as long as possible. Social workers meeting with families in the context of disclosure of a dementia diagnosis or the early adjustment period may help by identifying their losses, normalizing negative feelings, and helping families envision ways they could use outside help.     

Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers’ Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers’ unique concerns and challenges and that build upon their existing care networks are recommended.     

To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia

ABSTRACT

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of information and in regards to conflicting interests between different actors involved in the assessment of the need for support for people with dementia. Strategies used to handle problematic situations that arise in their work are using other sources for information (e.g., relatives and actors from other professions), persuading, and pursuing creative forms of consent. However, the study shows that dilemmas and strategies used generate other, prominently moral, dilemmas for care managers in their practice, which relate to participation and self-determination by the person with dementia. The study shed light on the problematic situation for care managers in their work to coordinate information and further the new “realities“ that they encounter as well as on how to handle these new situations. This study suggests possible ways to improve the everyday work of care managers, as well as how policies concerning social work and people with dementia can be improved.