Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis

Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other community‐based initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community‐based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co‐ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community‐based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is not clearly established.     

The nutritional care of people living with dementia at home: A scoping review

There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross‐sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi‐component tailored interventions and the influence of the care‐giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care‐giving dyad influences nutritional care.     

Evaluating the effects of a multicomponent support service for people recently diagnosed with dementia and their carers: A qualitative study

Introduction

Although prior research has provided an understanding of the needs of people living with dementia (PLWD) and their carers, less is known about how tailored multicomponent interventions impact their lives. This study explored the effect of providing ongoing support to people who had been recently diagnosed with dementia and to their carers.

Methods

We conducted interviews with a convenience sample of key stakeholders: 11 interviews with people who had dementia and their familial carers (n = 14) and six interviews with staff and other practitioners involved with the service (n = 13). Inductive thematic analysis was performed on the data.

Results

Four themes were developed: the service as a source of respite, peer support, activities as facilitators of emotional wellbeing, and social support. The service was well-respected, credible, and trusted and was highly valued by practitioners, clients, and carers. It had a clear role in supporting PLWD and their carers. Peer support provided through the service contributed to greatly reducing self-reported carer burden.

Conclusion

Recommendations arising from this study include offering holistic services to PLWD and their carers, developing activities for men, raising awareness of services among practitioners working with PLWD, and improving partnerships between services and agencies working with older people.

Patient or Public Contribution

Service users were consulted on the themes generated from the data and were asked to provide feedback to help guide the interpretation of the data and ensure this reflected their views and experiences.     

Joining the dots: Day to day challenges for practitioners in delivering integrated dementia care

Despite the increasing policy focus on integrated dementia care in the UK, little is known about the opportunities and challenges encountered by practitioners charged with implementing these policies on the ground. We undertook an extensive, mixed-methods analysis of how a contemporary multidisciplinary dementia pathway in the UK was experienced and negotiated by service providers. Our pragmatic mixed methods design incorporated three types of research interaction with practitioners: (a) Semi-structured interviews (n = 31) and focus group discussions (n = 4), (b) Practitioner ‘shadowing’ observations (n = 19), and (c) Service attendance and performance metrics reviews (n = 8). Through an abductive analysis of practitioner narratives and practice observations, we evidenced how inter-practitioner prejudices, restrictive and competitive commissioning frameworks, barriers to effective data sharing and other resource constraints, all challenged integrative dementia care and led to unintended consequences such as practice overlap and failure to identify and respond to people's needs. In order to more successfully realise integrated dementia pathways, we propose innovative commissioning frameworks which purposefully seek to diffuse power imbalances, encourage inter-provider respect and understanding, and determine clear lines of responsibility.     

Patient‐centred care training needs of health care assistants who provide care for people with dementia

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.     

Good practice in social care: the views of people with severe and complex needs and those who support them

This paper reports findings drawn from a study of good practice in English social care for adults with disability and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource‐intensive needs. The study involved qualitative research with adults with disability and older people with severe and complex needs, family carers and members of specialist organisations (n = 67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face‐to‐face and telephone interviews, Talking Mats^© sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: (i) everyday support; (ii) service organisation; and (iii) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person‐centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets. This approach focuses very much on the role of the individual in directing his/her own support arrangements. However, participants in this study also stressed the importance of ongoing professional support, for example, from a specialist key worker or case manager to co‐ordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield.     

The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

Tools to evaluate medication management for caregivers of people living with dementia: A systematic review

BackgroundCaregivers often undertake medication management for people living with dementia without formal training. There is a need to evaluate caregiver medication management practices for people living with dementia to identify and address the key issues that contribute to caregiver burden.ObjectivesThis study aimed to identify and summarize approaches that evaluate medication management for caregivers of people living with dementia and appraise caregiver''s involvement in aspects of medication management.Search StrategyA systematic search was undertaken in five databases: Medline, Embase, PsycINFO, Scopus and International Pharmaceutical Abstracts. Studies written in English that contained tools and surveys that evaluated aspects of medication management for caregivers of PWD were included.ResultsA total of 10 studies were included. Medication selection was assessed in six studies, supply and monitoring/review was captured in seven studies, with administration assessed in nine studies. Caregivers were commonly involved in decision‐making for medication changes (77.1%–86.8%) and in the ordering (55.9%–86.0%) and collection (87.0%–92.4%) of medications. Reported caregiver involvement in medication administration showed a wide range (44%–94.7%) between the studies. Challenges in administration were commonly related to polypharmacy and dosage regimen complexity.ConclusionsCurrent tools capture specific aspects of medication management, with medication administration the most evaluated aspect of medication management. Future research is needed to develop a tool to holistically evaluate the complexities of medication management for caregivers of people living with dementia to minimize adverse events at transitions of care.Public ContributionFrom the authors'' previous research, caregivers highlighted the need to address key issues in medication management for people living with dementia.     

Comprehensive geriatric assessments in integrated care programs for older people living at home: A scoping review

In many integrated care programs, a comprehensive geriatric assessment (CGA) is conducted to identify older people's problems and care needs. Different ways for conducting a CGA are in place. However, it is still unclear which CGA instruments and procedures for conducting them are used in integrated care programs, and what distinguishes them from each other. Furthermore, it is yet unknown how and to what extent CGAs, as a component of integrated care programs, actually reflect the main principles of integrated care, being comprehensiveness, multidisciplinarity and person‐centredness. Therefore, the objectives of this study were to: (a) describe and compare different CGA instruments and procedures conducted within integrated care programs for older people living at home, and (b) describe how the principles of integrated care were applied in these CGAs. A scoping review of the scientific literature on CGAs in the context of integrated care was conducted for the period 2006–2018. Data were extracted on main characteristics of the identified CGA instruments and procedures, and on how principles of integrated care were applied in these CGAs. Twenty‐seven integrated care programs were included in this study, of which most were implemented in the Netherlands and the United States. Twenty‐one different CGAs were identified, of which the EASYcare instrument, RAI‐HC/RAI‐CHA and GRACE tool were used in multiple programs. The majority of CGAs seemed to reflect comprehensiveness, multidisciplinarity and person‐centredness, although the way and extent to which principles of integrated care were incorporated differed between the CGAs. This study highlights the high variability of CGA instruments and procedures used in integrated care programs. This overview of available CGAs and their characteristics may promote (inter‐)national exchange of CGAs, which could enable researchers and professionals in choosing from the wide range of existing CGAs, thereby preventing them from unnecessarily reinventing the wheel.     

Continuity of care and health care cost among community‐dwelling older adult veterans living with dementia

ObjectivesTo estimate the causal impact of continuity of care (COC) on total, institutional, and noninstitutional cost among community‐dwelling older veterans with dementia.Data SourcesCombined Veterans Health Administration (VHA) and Medicare data in Fiscal Years (FYs) 2014‐2015.Study DesignFY 2014 COC was measured by the Bice‐Boxerman Continuity of Care (BBC) index on a 0‐1 scale. FY 2015 total combined VHA and Medicare cost, institutional cost of acute inpatient, emergency department [ED], long‐/short‐stay nursing home, and noninstitutional long‐term care (LTC) cost for medical (like skilled‐) and social (like unskilled‐) services were assessed controlling for covariates. An instrumental variable for COC (change of residence by more than 10 miles) was used to account for unobserved health confounders.Data CollectionCommunity‐dwelling veterans with dementia aged 66 and older, enrolled in Traditional Medicare (N = 102 073).Principal FindingsMean BBC in FY 2014 was 0.32; mean total cost in FY 2015 was $35 425. A 0.1 higher BBC resulted in (a) $4045 lower total cost; (b) $1597 lower acute inpatient cost, $119 lower ED cost, $4368 lower long‐stay nursing home cost; (c) $402 higher noninstitutional medical LTC and $764 higher noninstitutional social LTC cost. BBC had no impact on short‐stay nursing home cost.ConclusionsCOC is an effective approach to reducing total health care cost by supporting noninstitutional care and reducing institutional care.     

Integrated health and social care in the community: A critical integrative review of the experiences and well-being needs of service users and their families

A need for people-centred health and social support systems is acknowledged as a global priority. Most nations face challenges in providing safe, effective, timely, affordable, coordinated care around the needs and preferences of people who access integrated health and social care (IHSC) services. Much of the current research in the field focuses on describing and evaluating specific models for delivering IHSC. Fewer studies focus on person-centred experiences, needs and preferences of people who use these services. However, current international guidance for integrated care sets a precedence of person-centred integrated care that meets the health and well-being needs of people who access IHSC services. This integrative literature review synthesises empirical literature from six databases (CINAHL; MEDLINE; AMED; TRIP; Web of Science and Science Direct; 2007–2019). This review aims to better understand the experiences and health and well-being needs of people who use IHSC services in a community setting. Twenty studies met the inclusion criteria and results were thematically analysed. Three overarching themes were identified, including relationships, promoting health and well-being and difficulty understanding systems. Findings of this review indicate that relationships hold significance in IHSC. People who access IHSC services felt that they were not always involved in planning their care and that there was a lack of clarity in navigating integrated systems; subsequently, this impacted upon their experiences of those services. However, service user and informal carer voices appear to be underrepresented in current literature and studies that included their views were found to be of low quality overall. Collectively, these findings support the need for further research that explores the person-centred experiences and needs of people who access IHSC.     

Quality of life from the viewpoint of patients with dementia in Japan: nurturing through an acceptance of dementia by patients, their families and care professionals

The quality of life (QoL) of patients with dementia was investigated from the patient's viewpoint, and the role of an acceptance of dementia in maintaining important and distinctive elements of QoL was analysed by questionnaire and interview methods. The subjects of the present study were 18 patients, 21 family members and eight members of staff at a day-care facility in Japan. Patients with dementia hoped to maintain an 'ordinary' way of life. Living peacefully, living together, living healthily and helping each other were considered by patients with dementia to be the important elements of their QoL. Living happily in the present is important, but hopes and expectations for the maintenance of human values in their future lives are of greater importance in their estimation of QoL. Through recognizing these needs, a culture and understanding of 'living with dementia' can be nurtured. A dynamic process involving the mutual acceptance of dementia in the relationships between patients with dementia, their families and care professionals enabled elderly people to surmount their initial troubles, and to recoup and activate their former humane attitudes. Positive thinking reappeared and new forms of relationships emerged. The patients, their families and the care professionals came to understand each other better and gained the sense of 'living together'. The process began with 'confronting' the situation and progressed to the final stage of 'acceptance': the patient with dementia was confronted with the dementia itself, the family was confronted with the elderly person as a human being, and the care professional was confronted with her or himself. At first, the care professionals had felt a sense of social responsibility for delivering justice, but they had gradually noticed that they were themselves relieved of the strain resulting from these attitudes. Acceptance of dementia by the care professional was important in carrying forward this dynamic process, which helps to ensure the desired QoL for the patient with dementia.     

整合照料式养老服务研究现状及发展趋势

21世纪人口老龄化已成为全球不可逆转的趋势。众多研究显示整合照料式养老服务是应对人口老龄化的有效措施。通过检索Web of science-SCI、PubMed、ScienceDirect、Wiley、中国知网及万方等数据库,查阅国内外近年来发表的所有相关文献,以整合照料的概念、整合照料式养老服务模式、研究现状及现存问题作为框架进行文献综述,以期为我国整合养老服务模式的构建提供参考。