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.     

Geriatric Care during Public Health Emergencies: Lessons Learned from Novel Corona Virus Disease (COVID-19) Pandemic

ABSTRACT

Geriatric care in public health emergencies is a serious concern, while, high case-fatalities among older adults across the globe in COVID-19 pandemic implies lack of preparedness. Most of the countries irrespective of developing and developed one enormously struggling because of an inchoate response system ignorant of geriatric health needs. Therefore, a robust approach is highly essential that requires an integrated emergency preparedness by addressing geriatric care.     

Armed and Aging: Dementia and Firearms Do Not Mix !

ABSTRACT

The possibility that persons with dementia possess firearms is cause for concern, but only a limited number of research studies have been conducted on such a topic, usually in the form of case reports. Reducing the occurrence of the firearm-related violence requires effectively identifying dangerous individuals and keeping firearms out of their hands. The health care professionals, i.e. the social workers and the physicians, need to work together and to produce a suitable evaluation of patients with dementia to prevent firearm-related injuries and serious and irreparable damage to persons.     

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.     

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.     

Staff and family attitudes to fences as a means of detaining people with dementia in residential aged care settings: The tension between physical and emotional safety

This study investigates staff and family attitudes towards the use of the fences that surround many aged care facilities in Australia, in the context of indefinite detention of people with dementia. This indefinite detention has been described in a report from an Australian Senate Inquiry as “a significant problem within the aged care context”, which “is often informal, unregulated and unlawful”. Five focus groups comprising direct care workers, family members, nurse unit managers and facility managers discussed the reasons for and their attitudes towards fences. The results show a tension between the provision of physical and emotional safety. This is to say that even while it is illegal to detain people with dementia against their will, and even while participants understood the negative impact of fences on the well‐being and emotional safety of people with dementia, they accepted and supported the presence of perimeter fences because they provided the perception that fences kept people with dementia physically safe. This has implications for redressing the balance between physical and emotional safety in policy and practice.     

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.     

Being with a Person in Our Care: Person-Centered Social Work Practice that is Authentically Person-Centered

ABSTRACT

Person-centered care (PCC) has emerged over the last several decades as the benchmark for providing quality care for diverse populations, including older adults with multiple chronic conditions that affect daily life. This article critiques current conceptualizations of PCC, including the social work competencies recently developed by the Council on Social Work Education, finding that they do not fully incorporate certain key elements that would make them authentically person-centered. In addition to integrating traditional social work values and practice, social work’s PCC should be grounded in the principles of classical Rogerian person-centered counseling and an expanded conceptualization of personhood that incorporates Kitwood’s concepts for working with persons with dementia. Critically important in such a model of care is the relationship between the caring professional and the care recipient. This article recommends new social work competencies that incorporate both the relationship-building attitudes and skills needed to provide PCC that is authentically person-centered.     

Understanding Ambiguous Loss in the Context of Dementia Care

Abstract

This study examined the experience of ambiguous loss for family members caring for a person with dementia living in a long-term care facility. Data for this study came from in-depth, active interviews conducted with 38 adult daughters and 23 adult sons caring for a parent with dementia living in a long-term care facility. The stories shared by the adult children revealed that ambiguous loss in the dementia context involves a long, on-going process of several phases including anticipatory loss, progressive loss and acknowledged loss. The nature of the ambiguity shifts and the experience changes for families as they journey through the ambiguous loss process. Acceptance and avoidance were the two most common coping strategies used in dealing with acknowledged loss.     

Land of Forgetfulness

Abstract

The personal circumstances of dementia caregiving are sometimes experienced as so severely demanding as to be overwhelming. While sustenance within, and recovery from these experiences are increasingly addressed in helpful ways from psychological, emotional, and practical life planning frames of reference, we are still learning how to speak with one another about the spiritual dimensions of this peculiar journey. From a spiritual perspective, the caregiver initially, and frequently perpetually, finds her/himself in a state of spiritual exhaustion. Oddly enough, there are ample resources at hand to address this existential state with wisdom and grace, allowing for the possibility that the caregiver might move from spiritual weariness to enhanced spiritual formation.     

Adults with Down Syndrome and Alzheimer's Disease

Abstract

An increasing number of people with Down syndrome are at risk of dementia resulting from Alzheimer's disease. Many reside in community group homes. When they are affected by dementia, the challenge to agencies providing group homes is how to best provide continued housing and provide effective dementia-related care management. In the general population, long term care is typically provided in nursing facilities, often in special care units (SCUs). This study evaluated select factors found in group homes and SCUs to determine which is able to provide a better quality of life for people with Down syndrome affected by dementia. Interviews, using quality of life indicators, were conducted at 20 sites, equally selected from group homes and SCUs, on the basis of their experience with people with dementia. Results indicate that group homes can provide conditions associated with better quality of life and, additionally, operate with lower staffing costs due to the non-utilization of medical staff.     

Physician-Assisted Suicide and Midwest Social Workers: Where Do They Stand?

ABSTRACT

Physician-assisted suicide (PAS) is explicitly legal in five states and by court decision in one. Legislative bills have been introduced in other states including Minnesota, Iowa, and Wisconsin. This quantitative study was designed to understand Midwest, hospice and palliative care at end-of-life social workers’ attitudes toward PAS, preferred terminology, perception of preparedness for the implementation, and awareness of PAS legislation in their state. Sixty-two social workers from Minnesota, Iowa, and Wisconsin completed an anonymous online survey. The results indicated that over one-half of the participants supported PAS legislation and is consistent with previous research on social workers across the country. While there was a range of perceived preparedness for implementation, a majority felt moderately to very prepared. Professional and personal values as well as professional experience influenced their perceived preparedness. Few social workers had accurate awareness of PAS legislation in their state or had attended workshops/events for further education or as a policy advocate. To practice competently and advocate at all levels of practice, hospice and palliative care at end-of-life social workers’ need to understand their own attitudes and values toward PAS and pursue additional education around this ethical issue.     

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.     

An evaluation study of a dementia screening program in taiwan: an application of the theory of planned behaviors

A challenge facing dementia service providers is how to detect dementia early to facilitate timely intervention. This article reports findings of an evaluation study of a dementia-screening program in Taiwan utilizing the Theory of Planned Behaviors. We present the Short Portable Mental Status Questionnaire (SPMSQ) program rationale and examine the effects of this important health and social service intervention. Follow-up telephone interviews were completed by 108 respondents. Findings indicate that the SPMSQ program was successful in identifying suspected dementia. Results also show that the dementia-screening program contributed to an increase in medical service utilization and in unpaid informal care.     

Danger and Dementia: Caregiver Experiences and Shifting Social Roles During a Highly Active Hurricane Season

This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer’s or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004–2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.     

The Thanatological Movement

Abstract

The second Social Work Summit on End-of-Life and Palliative Care was held from June 1 to June 3, 2005. Sixty representatives of more than 35 social work and other professional organizations with a commitment to improve care for the terminally ill, dying, and bereaved, attended and formulated key priority directions and initiatives that will further the field.     

Advance Care Planning in the Delivery of Adult Protective Services

ABSTRACT

In ensuring the safety and protection of older adults from abuse and exploitation, adult protective services (APS) workers face a variety of situations involving serious illness and end-of-life conditions. Many older adults encountered in APS will present with one or more chronic conditions that may warrant discussion of advance care planning with clients and their families. This study surveyed APS workers (n = 508) in 21 states regarding encounters with end-of-life situations and the practice of future care planning. Results revealed that three-fourths of APS workers encounter clients with serious illnesses and about two-thirds do discuss planning in advance for care. More than one-half of the respondents indicated client incapacity and refusal to address future care needs as barriers to discussing planning in advance for care. Recommendations to enhance advance care planning among APS workers are discussed.     

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

ABSTRACT

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a ‘live discharge’ from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.