Dementia,disability rights and disablism: understanding the social position of people living with dementia

This article considers the recent history and consequences of positioning people living with dementia in the realms of disability, disablism and disability rights. The geo-political focus is the United Kingdom and neighbouring resource-rich nations in the Global North. The first section examines the growing trend of identifying ‘dementia’ with ‘disability’, a trend fuelled by the expansion of dementia-related activism and research. The second section focuses on how researchers who have published in Disability & Society and other journals have applied the social model of disability to individuals living with dementia. The third section discusses three conceptual challenges that lie ahead for those who choose to research and theorise the dementia/disability connection. These challenges concern: theorising dementia as disability; understanding intersectionality in dementia contexts; and understanding ‘abuse’ in dementia contexts.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

“Ours is the Strangest Situation,Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.     

Factors affecting user participation for elderly people with dementia living at home: a critical interpretive synthesis of the literature

ABSTRACT

Professional caregivers are expected to facilitate user participation for people with dementia. At the same time, an increasing number of elderly people with dementia are now being cared for at their homes. Research is scarce on user participation for people with dementia, especially for people with dementia who live at home. This article aims to systematically and critically review the factors affecting user participation for elderly people with dementia living at home from the viewpoint of the patients, family caregivers, professional caregivers and researchers. A systematic literature search and critical interpretive synthesis were conducted. The search yielded 1,957 articles. In total, 112 full-text articles were retrieved, of which 27 met the inclusion criteria. Five broad analytical themes were identified during the analysis: individual characteristics, professional caregiver characteristics, decision characteristics, relational characteristics and organisational characteristics. The results show that the value placed on user participation can differ between family caregivers and professional caregivers. People with dementia still experience stigmatisation, preventing user participation, and relations with both family and professional caregivers play a key role in enabling user participation for people with dementia.     

An integrated dementia intervention for Korean older adults

Called dotage in Korea, dementia is primarily characterized by cognitive impairments. Secondary manifestations include mental-emotional problems, including depression. This study was designed to examine the effects of an integrated dementia intervention for Korean older adults. The intervention is composed of cognitive stimulation training, exercise, music, art, and horticultural therapy. Participants included 38 older adults with mild dementia. Twenty were assigned to the experimental group and 18 to the control group. Participants in the experimental group attended 18 program sessions. Significant differences were found postintervention between the two groups in measures of cognitive function, depression levels, and mental-emotional health. The findings indicate that this integrated dementia intervention can be applied to help older adults with mild dementia.     

The dementia narrative: Writing to reclaim social identity

The social needs of individuals with dementia are often not addressed. Impoverished social interactions can place the person at risk of being negatively positioned by others and without means to assert their unique identity. In seeking strategies to help these individuals reclaim their social and personal identity, we have turned to the analysis of published memoirs by writers with dementia. Selected quotations show that through writing it is possible for an individual with dementia to engage with others in a dialogue that creates meaning and forms identity. Writing renews an individual's status as a contributing social partner, provides new and positive roles, and introduces empowerment and control. The memoirs demonstrate that dementia can be a time of growth and that authors with dementia construct and project positive new identities, which are full expressions of personhood.     

The Accessibility of Public Spaces for People with Dementia: a new priority for the 'open city'

The social model of disability de-medicalises disability and politicises it as an issue of universal rights. However, the rights of people with dementia have been less strongly advocated than those of people with physical disabilities. This is particularly the case with environmental planning and design. The needs of people with dementia are now informing the design of residential homes and day centres, but the issue of accessibility to public spaces and amenities has been almost completely neglected. Many outdoor environments such as shopping centres or parks may be inhospitable for people with dementia because they are disorientating, difficult to interpret and navigate, threatening or distressing. The article reviews the literature on indoor design for dementia, reports on research investigating the accessibility of outdoor environments, and describes a new approach using virtual reality technology to enable people with dementia to identify and test outdoor design and planning improvements themselves.     

Contact with Outdoor Greenery Can Support Competence Among People with Dementia

SUMMARY

Dementia disorders are increasing among populations all over the world due to growing life expectancy. Since dementia widely affects cognition, especially short-term memory and orientation, people with dementia are more dependent on provisions from their environment to act successfully than those without dementia. Green environments have been associated with reduced autonomic arousal leading to stress recovery and improved affective state. In this paper we introduce theories and empirical studies about healing and green environment, and present our findings on the impact of plants, and of seeing and being outdoors on the well-being of people with dementia in day care and in residential care. The first study is based on a survey of 65 nursing staff from ten residential care homes. The second study involved 123 people with dementia from two day care units and six residential care units.     

Listening to Older Women with Dementia: relationships, voices and power

Four older women with dementia were interviewed about their experiences of their services. People with dementia are rarely asked for their opinions or judged to be fully legitimate persons. Gaps in previous research concerning people with dementia is presented, with respect to listening to people with dementia themselves and with respect to gender issues. The present study is described and the methodology for analysis, Brown and Gilligan's Voice Relational Method, is presented. This method was developed to listen to adolescent girls and has been used to listen to the voices of others who are disempowered in society. Its focus on relationships and issues of power was useful in this study. The methodology is presented in the context of debates within feminist and disability research. The results of the interviews are discussed, particularly with respect to power in the women's relationships, and particularly the relationships between the women with dementia and medical staff. Some implications of these power issues are presented and recommendations are made.     

Dementia and Dementia Care: The Contributions of a Psychosocial Perspective

The social sciences have and continue to play a unique role in the study of dementia and dementia care. For central to the social sciences, particularly the discipline of sociology is a history of critical inquiry that challenges long held societal assumptions, a concern for issues of social justice, social exclusion and the treatment of marginalized populations. All significant areas to consider when caring for a person with dementia. This chapter will trace the development of the study of dementia and dementia care starting with its biomedical roots, examine the contributions of the social sciences in furthering the conceptual development of the field, and suggest future areas where sociologists can play a critical role in the provision of quality dementia care.     

Teaching Note—Lessons Learned From Developing and Implementing a Dementia Caregiving Graduate-Level Service-Learning Course

ABSTRACT

This teaching note delineates seven lessons learned when designing and implementing a graduate-level dementia caregiving service-learning course. The course was designed during a 1-year faculty service-learning fellowship and implemented during the summer of 2015. The course used a person-in-environment framework to explain social work practice with family systems affected by dementia. It aimed to increase students’ knowledge about dementia and improve students’ attitudes toward working with people with dementia through respite visits with families affected by dementia. Three recommendations for future course offerings are described.     

Dementia policy revisited: an analysis of the state laws targeted towards individuals with Alzheimer's disease and other forms of dementia.

Even though state governments assume public responsibility for persons with dementia, formal analysis of state laws concerning individuals with Alzhemier's disease and other forms of dementia has been rare. We responded to this by collecting and evaluating state legislation targeted towards individuals with dementia. These laws were collected by searching online statutory archives and were defined by the type of action, year of passage, and legislative purpose. Our research revealed that the legislatures have targeted an average of slightly more than five action towards persons with dementia. We also discovered that the earliest legislative act targeting individuals with dementia was passed by South Dakota in 1939, and by the end of the 1997 sessions, 49 state legislatures had enacted at least one targeted law. We sorted the variety of legislative actions into eight categories and illuminated how the purposes of these laws differed from one state legislature to the next. This research expands knowledge concerning state policies targeting people with dementia, imtroduces a reliable method of collecting state laws, and contributes to the advocacy effort made on behalf of persons with dementia.     

Dementia Policy Revisited

Abstract

Even though state governments assume public responsibility for persons with dementia, formal analysis of state laws concerning individuals with Alzheimer's disease and other forms of dementia has been rare. We responded to this by collecting and evaluating state legislation targeted towards individuals with dementia. These laws were collected by searching online statutory archives and were defined by the type of action, year of passage, and legislative purpose. Our research revealed that the legislatures have targeted an average of slightly more than five actions towards persons with dementia. We also discovered that the earliest legislative act targeting individuals with dementia was passed by South Dakota in 1939, and by the end of the 1997 sessions, 49 state legislatures had enacted at least one targeted law. We sorted the variety of legislative actions into eight categories and illuminated how the purposes of these laws differed from one state legislature to the next. This research expands knowledge concerning state policies targeting people with dementia, introduces a reliable method of collecting state laws, and contributes to the advocacy effort made on behalf of persons with dementia.     

Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

This article examines the experiences of citizens with dementia who campaign for social change, with a particular focus on the effects of campaigning on citizenry identity and psycho-emotional well-being. In diary-interviews, 16 people with dementia recorded and described their experiences of campaigning. Findings revealed that although campaigning can be energising and reaffirming of citizen identity, because it (re)located a person within the realm of work, individuals may experience dementia-related fatigue and oppression linked to normative expectations about what someone with dementia ‘should’ be like. The discussion is linked to critical debates within disability studies about the psycho-emotional aspects of impairment and disability, and concludes that the struggle for citizenship has only just begun for people with dementia.     

Living with dementia,interdependence and citizenship: narratives of everyday decision-making

This article argues that interdependent relationships are key in realising inclusion and citizenship for people living with dementia. We focus on decision-making as one aspect of everyday life which reflects opportunities and challenges associated with citizenship. Accounts of everyday decision-making from people living with dementia provide insight into strategies for negotiating responsibilities as they shifted with dementia. An inductive, secondary data analysis developed decision narratives from the data of 61 interviews conducted in the United Kingdom. The interviews were with 12 people with a diagnosis of dementia plus their nominated care-partner in a qualitative study which focused on information management and sense of self. The secondary data analysis identified strategies for inclusion, emphasising relational interdependency amidst challenges. The five-stage framework of an Ethic of Care positions this interdependency as a response to barriers to inclusion and citizenship. Interdependency, therefore, emerges as key to realising relational citizenship.     

Young-onset dementia: a review of the literature and what it means for clinicians

It is estimated that more than a half million people in the United States are living with young-onset dementia and another half million with mild cognitive impairment, a precursor of dementia. Relatively little has been written about the psychosocial needs of these people, but information can be extrapolated from the literature on dementia in older adults and the developmental tasks and roles of middle age. This article synthesizes this literature and provides information to help psychiatric nurses and other health care professionals better understand individuals living with young-onset dementia.     

From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia

Research on subjective experiences of dementia has paid scant attention to social location, due to fairly homogeneous samples and an inattention to socio-cultural diversity in data analysis. This article addresses this gap by presenting findings from a grounded theory study of the relationships between the experiences of older people with dementia and the intersections of ‘race’, ethnicity, class, and gender. Data generation occurred through a series of interviews, participant observation sessions, and focus groups with eight older people with dementia whose social locations varied from multiply marginalized to multiply privileged plus over 50 members of their social worlds. Their experiences of dementia were found to be varied, ranging from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’, and to be related to their social locations. Negative views of life with dementia were not nearly as universal as past literature suggests and social location was found to mediate experiences of dementia.     

Dementia with cerebrovascular disease

In this case study, we review the symptoms, cognitive testing, brain imaging, and brain pathology of a woman with dementia, for whom the neuropathological findings suggest a prominent contribution of cerebrovascular disease. Vascular dementia is the term commonly used for persons with dementia resulting from strokes, either clinically evident or subclinical "silent" events. "Mixed dementia" is the term used when there is an admixture of pathological findings related to Alzheimer's disease (AD) and cerebrovascular disease, as in this situation. In some cases of mixed dementia, the pathological involvement of AD may be the principal contributory cause of the cognitive symptoms, and in others, the vascular changes may give the greater contribution.     

An Exploration of Adjustment Needs and Efforts of Persons with Dementia After Relocation to a Residential Care Facility

This study examined the adjustment needs and efforts of individuals with dementia after relocation to a residential care facility. This was a qualitative prospective study that involved in-depth face-to-face interviews with 16 individuals with dementia and their family caregivers at 2 and 6 months post-relocation. In their efforts to recreate a sense of home, individuals with dementia had to meet three major highly interrelated and overlapping categories of needs to settle in, fit in, and find meaning in this transition. The satisfactory fulfillment of these adjustment needs resulted in a sense of comfort, connection, and continuity associated with feeling at home. Participants’ efforts to place themselves in their new living environments created a simultaneous need to integrate relocation into their overall sense of self. The results support earlier research indicating that place making is a critical process in the overall psychosocial adjustment to old age. The findings inform supportive interventions to assist individuals with dementia to reconstruct home in a residential care environment.     

'They don't quite fit the way we organise our services'—results from a UK field study of marginalised groups and dementia care

The accessibility of dementia services to two groups of marginalised service users (people under 65 years of age and people from minority ethnic groups) was examined as part of a UK field study. In 61 interviews with a purposeful sample of professionals and paid carers in dementia care, the main issue in service access related to the small numbers of potential service users and their geographical dispersal. Other issues reflected those faced by people with dementia in general. At present, it seems as though decisions on care are based mainly on financial considerations and perceptions of the risk and dangerousness posed by people with dementia. These findings are linked to broader debates within the social model of disability about the need to address issues relating to people with learning impairments.