Community-based dementia care re-defined: Lessons from Iceland

Studies of families caring for persons with dementia living at home often reflect feelings of being forgotten and abandoned by the authorities to shoulder the responsibility for care-giving. This has increased interest in how formal services can better support these families. This article analyses how health and social care professionals envision the needs of families of persons with dementia living in the community. It also describes the contributions of the formal care system to these families. The study design was qualitative. It involved interviews with professionals (N = 20), field observations from the settings where they worked, and public documents addressing care-giving for people with dementia. Data were analysed using the framework method. The findings reflected how those providing services to persons experiencing cognitive changes mainly understood the services as specialised. They focused on the diagnosis and treatment of the individual with dementia. They considered other aspects of care, such as attending to practical issues of daily life, to be a private matter, for which the family was responsible. In later stages of dementia, specialised day programs become available, offering rehabilitation to motivate positive daily living—for both the person experiencing dementia and family-centred supporters. Professionals in the field described primary care, community-based healthcare and home care services as poorly equipped to support these families. Participants acknowledged that families were often under a lot of stress and might need more support earlier in the illness. However, they saw themselves as powerless. Towards the end of the data collection, services were being re-designed to emphasise the role of primary care. In light of its holistic and family-centred approach, primary care may be well placed to integrate relational understanding of living with dementia and specialised knowledge of dementia treatment.     

Zarit burden interview among caregivers of community-dwelling older adults in a caribbean setting (Jamaica): Reliability and factor structure

The Zarit Burden Interview has been the most popularly used tool for measuring caregiver burden and with the 60 years and over population in Jamaica and developing countries expected to increase, caregiver burden and its assessment assume increased importance. Establishing the reliability and underlying factor structure of instruments such as the ZBI is critical. This study sought to determine the reliability of the Zarit Burden Interview and to assess its underlying factor structure. The ZBI was administered to 180 caregivers of community dwelling older persons in Jamaica in a nationally representative sample across four geographic health regions in 2016. The factor structure was identified using exploratory factor analysis (EFA) with Varimax rotation. Cronbach's alpha was used to assess internal consistency/reliability of the instrument. The internal consistency/reliability of the ZBI instrument was high (Cronbach's α = 0.859) and the corrected item-total correlations ranged from 0.134 to 0.730. The ZBI mean score was found to be 16.92 ± 12.04. EFA produced a six-factor model comprised of 19 items which explained 48.97% of total variance, and was subsequently reduced to four (37.27% of total variance) via the use of parallel analysis and scrutiny of confidence intervals. The four factors identified were ‘personal strain’, ‘social relations disruption’, ‘resource strain/imbalance’ and ‘role intensity’. The ZBI-22 tool is a reliable instrument for evaluating caregiver burden among community dwelling older persons in Jamaica. A four factor model has emerged providing greater insights on the underlying constructs of the ZBI, the most widely used caregiver burden assessment tool.     

The willingness to continue caring in family supporters of older people

Research has revealed the importance of characteristics of the supporter, the care-recipient, and circumstances of caregiving in the success or failure of community-based care of older people. The Dundee Study of Carers and Dementia examined factors associated with the maintenance and care of older people in the community, and with the impact of dementia on family supporters. Two hundred and twenty-eight family supporters of community-resident older people (≥65) (50% with dementia, 50% without, matched for age and sex) were interviewed. Supporters' responses to their relative's condition and circumstances, their ways of coping with stressful caregiving problems, and their willingness to continue their caregiving role, were assessed. Findings indicated that willingness to care and stress were associated in different ways with the supporter's response to his/her relative. Coping was found to be significantly associated with stress, response to relative, and willingness to care in only three out of a total of 45 tests. Willingness to care was positively associated with the coping behaviour internalization. The findings are discussed in the context of developing interventions for improving the well-being of supporters of an older relative in the community.     

Adaptation to Chronic Dialysis

While dialysis is a medical advance that enables people to live who would otherwise die, it is often experienced as an ordeal by those who must live with it. Patients and staff experience difficulties in their adaptation to chronic dialysis. A program that excepts all patients, regardless of motivation and stability, carries with it the responsibility of offering care in a way the patient can tolerate and of providing a regimen within the context of his personality structure and social adaptation.     

精神病医院护士实施关怀照护行为现状调查

目的了解精神病医院护士实施关怀照护行为的现状。方法选择精神病专科医院护士198名,采用关怀行为量表（caring behavior scale,CBS）进行调查。结果精神病医院护士关怀照护行为总均分为（54．75±12．07）分,3个维度的得分从高到低为：协助病人渡过疾病不平顺过程得分（2．11±0．51）分,了解病人需求得分（1．75±0．62）分,病人权益的维护得分（1．67±0．46）分。结论精神病医院护士的关怀照护行为较低。应采用相应的激励机制激发精神病医院护士工作热情,采取多种措施对精神病医院护士进行专业化、系统化培训及不断更新继续教育内容,以提高他们的关怀照护行为。     

Well-being and needs of Malay carers of people with mental illness in Singapore

Despite the importance of carers supporting the lives of people with mental illness, there are limited studies investigating the well-being and needs of Malay carers in multicultural Singapore. The Malays consist of 13.4% of Singapore's population. A mixed methods qualitative dominant research approach was used to explore the well-being and needs of Malay carers in a voluntary welfare organisation. The Kessler-10, Friendship Scale and Carers' and Users' Expectations of Services—Carer version were used to assess the needs and well-being of 17 Malay carers. Findings show that Malay carers experienced poor well-being and had numerous unmet needs. Four main themes were found: (a) Concerns related to relatives with mental illness, (b) Mental health practices related to carers, (c) Holistic support for carers and (d) Preference for greater spiritual support in mental health. Recovery-oriented mental health practice implications are discussed. Spirituality of Malay carers needs to be given greater consideration in recovery-oriented mental health services.     

Determinants of primary and non-primary informal care-giving to home-based palliative care cancer care-recipients in Ontario,Canada

Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.     

Tailoring Psychological Interventions for Ethnically Diverse Dementia Caregivers

Alzheimer's disease and other dementias are common disorders that widely affect older adults of all races and ethnicities. Although there has been considerable research focusing on the stress experienced by family caregivers of patients with dementia, there has been little work to guide clinicians in tailoring interventions to the special needs of racially and ethnically diverse families. This paper reviews guidelines for creating culturally competent interventions, as well as reviewing the literature on racial, ethnic, and cultural differences in the stress associated with caregiving for a family member with dementia. The paper then presents three intervention programs (adapted from existing treatments) that were tailored to be sensitive to cultural issues in caregiving among African Americans, Cuban Americans, and Mexican Americans. Results and directions for future research gathered from these intervention programs are presented and implications for clinicians and researchers are discussed.     

Guided participation and development of care-giving competencies for families of low birth-weight infants

Guided participation and development of care-giving competencies for families of low birth-weight babies ¶The concept of guided participation is central to theory for supporting families in developing competencies for care of their low birth-weight infants. Guided participation is a process through which an experienced person helps another person who has less experience to become competent in practices that are personally and socially meaningful practices of everyday life. A practice is made up of socially formed activities directed to accomplishing a recurring goal. For a parent, infant care-giving encompasses protecting, comforting and nurturing activities, including feeding. For premature infants, a mother’s care-giving begins during the neonatal intensive care unit stay and continues, after the infant’s discharge from hospital, in the home. Care-giving competencies are addressed through guided participation of a mother in her care-giving practice. In this process, her working model of herself as parent, her infant, and feeding is constructed and revised through the guided participation process. In this paper, a general theory of guided participation that could be used to promote care-giving competencies is described. Two cases from a pilot study are presented to illustrate the application of the theory to a mother’s feeding practice with infants who were born prematurely and who developed problems with feeding during the first year of life. These cases indicate that guided participation offers a means of precisely tailoring support for care-giving to the mother’s needs and goals for development of competencies. Further research on how guided participation is best introduced to families of varying resources and life circumstances, how it is best implemented across settings as the infant moves from hospital to home, and how nurses can apply its principles with available resources and opportunities is needed.