Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

ABSTRACT

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.     

Loss and grief: The experience of transition to residential aged care

There is growing recognition of the experience of non-death-related loss and grief. One unexplored area of non-death-related loss and grief is associated with older people’s transition from home to residential aged care (RAC). This paper reports findings from a qualitative study that explored the experiences of people living in RAC, carer-relatives of people living in RAC and RAC staff. Using theories of loss and grief, the paper identifies features of the transition to RAC that are associated with unresolved loss and maladaptation to changed circumstances, and the types of support that would mitigate these. Using a series of focus groups with both residents and carer-relatives, as well as staff, the study found that residents and their families need more support to negotiate the multiple, often necessarily hasty decisions and bureaucratic requirements associated with transitioning to RAC, while simultaneously experiencing loss and grief. The types of support that families would welcome from service providers include facilitating shared decision making, valuing family and community carer expertise and providing practical information and assistance to fulfil administrative obligations.     

A good death for residents of long-term care: family members speak

Little research has been done on the topic of end-of-life care in long-term care settings to identify important themes regarding end-of-life care structures, processes, and outcomes. This study utilized data gathered in a stratified, random sample of 437 family members of residents who died in 31 nursing homes (NHs) and 199 residential care/ assisted living facilities. Structural components of care including staffing adequacy, training, and consistency as well as facility environment and size were important factors for family members interviewed. "Being there" and manner of care delivery (e.g., staff attitudes/empathy) were major elements in the process of care. These factors were mentioned more than direct care, Hospice, or resident preferences. Family members identified themes of [dying at] home and being comfortable and clean as important outcomes of care. These identified structural components, processes, and outcomes have implications for the role of social workers in these settings despite that social work support is notably absent in these findings.     

困境与超越——民营(家族)企业女性成员的处境研究

中国社会主义市场经济建设的发展使得女性得以充分发挥作用。但由于受多种因素的影响,在民营家族企业中,女性家族成员依然在发展中遭遇巨大的障碍。我们在确立正确的女性权利观念、建立符合社会主义市场经济的个人所有权观念、建立合理的家庭财产权利配置与管理秩序等。     

Family perspectives on the hospice experience in adult family homes

Growing numbers of terminally ill older adults receive hospice services in adult family homes (AFHs); however, little is known about the provision and receipt of end-of-life care in such environments. This article reports findings from a qualitative exploration of family members' perspectives of the hospice experience in AFHs. Analysis of data obtained during interviews of 15 residents' family members exposed significant challenges associated with transition to an AFH, highlighted the importance of AFH and hospice staff in family members' assessment of overall quality of care, and emphasized the critical nature of communication in AFH settings.     

Living with a developmentally disabled child: attitude of family members in India

This study sought to create an in-depth understanding of the experiences of living with a family member suffering from developmental disabilities from the social as well as personal point of view through qualitative research. The study used phenomenological methodology. Sixteen participants were recruited through purposive and snowball method. Data were collected via an open-ended narrative inviting the informants to focus on the experiences of living with a family member suffering from the disorder and analyzed thematically. The issue of personal context emerged as a key theme in understanding perceptions of the respondents. Another important theme was that from the social context. This study explores the emotional sufferings faced by family members of the sufferer. It also provides insights into the Indian social culture and its impact on the family.     

Understanding the experience of moving a loved one to a long-term care facility:family members' perspectives

This project was designed to develop an understanding of family members' experiences of moving a loved one to a long-term care facility and to identify ways in which facilities might help ease this process. Twenty-one semi-structured interviews were conducted with family members who had recently moved a relative into one of three long-term care facilities in Southern Ontario, Canada. Several factors appeared to contribute to the overall experience of the move to long-term care and either served to impede or facilitate a positive transition for families. These factors included: the experience during the waiting process, preparation for the move, ease of the actual move, control over decisions, communication throughout the process, support from others, and family and resident perceptions and attitudes towards the move. Easing the difficult aspects of moving a loved one to a long-term care setting can be facilitated with better preparation and support from facilities and community services.     

A daily diary investigation of the influence of early family adversity on social functioning during the transition to adulthood

Early life stressors are associated with maladaptive social functioning in childhood and adolescence, but it is unclear whether and how the negative interpersonal effects of stress persist into adulthood. Daily diary surveys were used to examine young adults' social behavior and mood reactivity to social stressors as a function of experiences of early family adversity. Stressful early family environments predicted more daily reassurance seeking, but not aggression, withdrawal, or positive social behavior. Early family adversity also moderated the within‐person effects of social stressors on next‐day mood, such that individuals with high levels of adversity had elevated next‐day negative affect in response to higher than average social stress. Findings highlight the enduring impact of early adversity on social development, with implications for developing targeted policies and interventions.     

Learning to smell: on the shifting modalities of experience

ABSTRACT

How can one learn to perceive? The study of an expert training shows how olfactory learning combines two operations and modalities of experience: firstly, it rests upon doubt and the questioning of perception to turn its undisputable evidence into a changing plurality. Secondly, perception is reconstructed and stabilized according to a set of chosen constraints, thanks to a perpetual control and reworking of the inadequate perceptions.

This analysis brings us to reconsider the interpretation of the notion of “attention”. Trainees focusing on their perception do not make it more salient, precise and detailed, as per the representational interpretation of perception. They question it. In so doing, they foster a surge of “shades” and make it plural and variable. Attention denotes here a process of perceptual destabilization, through doubt.

Additionally, in the cases studied, the reflexivity that enables learning shows deconstructive aspects: through doubt, the surrounding world turns from self-evident to changing and plural. This does not fit the usual constructive character of reflexivity, as in “mind-” or “self-building” processes, for instance. At the core of the learning process, the shifting modalities of perception seem to open the door to a larger variety of understandings of reflexivity and their correlative selves.     

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.     

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.     

Staff experience of a new approach to family safeguarding in Oxfordshire Children's Social Care Services

This paper presents the findings from a qualitative study that sought to understand the experiences of frontline staff working in Oxfordshire County Council (OCC) Children's Social Care Services and their views on a new family safeguarding model (Family Solutions Plus). Focus group interviews were conducted with 20 frontline staff and managers in different teams across OCC Children's Social Care Services using video conferencing software. Thematic analysis identified three overarching themes: Preparation for the implementation of Family Solutions Plus, staff views on the implemented model, and challenges to its implementation. Staff voiced strong support for the new model, which places a much greater emphasis than previous practice on supporting the whole family, developing parenting skills and keeping children safe with their families. The challenges associated with the transition to a new model were considerable in the short term, partly due to the COVID-19 pandemic, but there was optimism that the new model could be sustained and stabilized over time.     

Inheriting a political career: The justices of the United States and Louisiana Supreme Courts

Sixty-three percent of the members of the United States Supreme Court (1789–1988) and forty-four percent of the members of the Louisiana Supreme Court (1812–1988) came from politically active families. Inheritors on both courts were preceded in office by close relatives and usually by more than one kinsman. Inheriting a political career is not as common as it once was but the dramatic decline in that pattern with respect to the courts is unique to those institutions. The careers of followers and nonfollowers are different. A family political legacy, which includes knowledge, skills, contacts, and a greater sense of political efficacy, confers career advantages which can be observed and measured.     

继承权向所有权转化探究

继承权向所有权转化 ,并非瞬间完成 ,而是一个或长或短的过程———继承人的期待继承权先转化为既得继承权 ,再转化为所有权。在继承权向所有权转化的过程中 ,继承权主体成为这一时段的权利主体 ,且该主体的确定是由下述环节决定的 ,即 :继承人范围的确定、遗产的保管与分割、继承人接受继承或放弃继承的意思表示、继承权的丧失以及继承人应继份的确定等。只有继承人享有、行使既得继承权 ,并依据物权的公示公信原则实现了所有权主体的更替 ,继承权才能转化为所有权。     

Failing to learn from experience about catastrophes: The case of hurricane preparedness

This paper explores the question of whether there are inherent limits to our ability to learn from experience about the value of protection against low-probability, high-consequence, events. Findings are reported from two controlled experiments in which participants have a monetary incentive to learn from experience making investments to protect against hurricane risks. A central finding is that investments display a short-term forgetting effect consistent with the use of reinforcement learning rules, where a significant driver of investments in a given period is whether storm losses were incurred in the precious period. Given the relative rarity of such losses, this reinforcement process produces a mean investment level below that which would be optimal for most storm threats. Investments are also found to be insensitive to the censoring effect of protection itself, implying that the size of experienced losses??rather than losses that are avoided??is the primary driver of investment decisions.