Alcohol misuse in older people: the role of home carers

Research on problems associated with alcohol use in older people is scant and contradictory. The “greying” of the population and the current emphasis on care in the community, mean that it is increasingly important to understand patterns of alcohol use which may incur risk in elderly people, and to develop appropriate prevention and early intervention approaches. This paper begins with a brief overview of the literature on alcohol misuse in older people, and discusses some of the problems of identifying and responding to problem drinking in the elderly. The paper then examines the potential role of one group of workers, home carers who, for many elderly people, are a crucial link to the world beyond their homes. It is suggested that home carers are well placed to respond to risky drinking among elderly people but that they experience both structural and personal barriers to adopting a more active role. The provision of appropriate information and training may go some way towards encouraging carers to remain alert to alcohol related problems in elderly clients but supportive, accessible services are also required.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

Good practice in social care for disabled adults and older people with severe and complex needs: evidence from a scoping review

This article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life‐limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety‐eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty‐six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty‐five papers advocated person‐centred support for people with complex needs, but no well‐supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho‐geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs.     

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.     

Outcome measures for routine use in dementia services: some practical considerations.

OBJECTIVES: To work with specialist community teams to assess the practicality and acceptability of identified outcome measures for routine use in dementia services. SETTING: Seven specialist dementia services: four multidisciplinary teams, a specialist service for carers, a community psychiatric nurse team, and a day hospital. SUBJECTS: 20 members of staff from the specialist dementia services including psychiatry, community psychiatric nursing, social work, occupational therapy, Admiral nursing, ward management, geriatric nursing. MAIN MEASURE: A questionnaire designed to assess staff views on the use of six outcome measures in routine practice in terms of practicality, relevance, acceptability, and use in improving care. RESULTS: Each of the outcome measures took 15 to 30 minutes to administer. All were rated as easy to use and as relevant to dementia services and to carers. Staff commented that the measures could be useful in routine practice for structured assessment and service evaluation, but highlighted the need for sensitive use of measures with carers. CONCLUSIONS: These measures consider the main domains of functioning for people with dementia and their carers. The measures are suitable for use in routine practice in dementia services and are acceptable to staff and carers. The project underlined the need for management support, staff ownership of measures, and training in using outcome measures. Staff concerns about service evaluation need to be acknowledged.     

Power,empowerment, and person‐centred care: using ethnography to examine the everyday practice of unregistered dementia care staff

The social positioning and treatment of persons with dementia reflects dominant biomedical discourses of progressive and inevitable loss of insight, capacity, and personality. Proponents of person‐centred care, by contrast, suggest that such loss can be mitigated within environments that preserve rather than undermine personhood. In formal organisational settings, person‐centred approaches place particular responsibility on ‘empowered’ direct‐care staff to translate these principles into practice. These staff provide the majority of hands‐on care, but with limited training, recognition, or remuneration. Working within a Foucauldian understanding of power, this paper examines the complex ways that dementia care staff engage with their own ‘dis/empowerment’ in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service (NHS) wards and one private care home in England, are presented as a narrative exploration of carers’ general experience of powerlessness, their inversion of this marginalised subject positioning, and the related possibilities for action. The paper concludes with a discussion of how Foucault's understanding of power may help define and enhance efforts to empower direct‐care staff to provide person‐centred care in formal dementia care settings.     

A person‐centred approach to family carer needs assessment and support in dementia community care in Western Australia

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty‐one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer‐led, person‐centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them.     

Experiences of home‐care workers with the ‘Stay Active at Home’ programme targeting reablement of community‐living older adults: An exploratory study

To face the challenges of an ageing population, many Western countries nowadays stimulate an ageing in place policy to empower older adults to grow old in their own homes with the highest degree of self‐reliance. However, many community‐living older adults experience limitations in (instrumental) activities of daily living ((I)ADLs), which may result in a need for home‐care services. Unfortunately, home‐care workers often provide support by taking over tasks, as they are used to doing things for older adults rather than with them, which undermines their possibilities to maintain their self‐care capabilities. In contrast, reablement focuses on capabilities and opportunities of older adults, rather than on disease and dependency. Consequently, older adults are stimulated to be as active as possible during daily and physical activities. The 'Stay Active at Home' programme was designed to train home‐care workers to apply reablement in practice. To explore the experiences of home‐care workers with this programme an exploratory study was conducting in the Netherlands, between April and July, 2017. In total, 20 participants were interviewed: nine nurses (including a district nurse), 10 domestic support workers and the manager of the domestic support workers. The semi‐structured interviews focused on the experienced improvements with regard to knowledge, skills, self‐efficacy and social support. Furthermore, the most and least appreciated programme components were identified. The study has shown that home‐care workers perceived the programme as useful to apply reablement. However, they also need more support with mastering particular skills and dealing with challenging situations. Future implementation of the 'Stay Active at Home' programme can potentially benefit from small adaptions. Furthermore, future research is needed to examine whether the programme leads to more (cost‐) effective home care.     

Food provision for older people receiving home care from the perspectives of home‐care workers

Malnutrition is a significant cause of morbidity and mortality, particularly among older people. Attention has focused on the inadequacies of food provision in institutions, yet the majority suffering from malnutrition live in the community. The aim of this study was to explore barriers and facilitators to food provision for older people receiving home care. It was a qualitative exploratory study using semi‐structured interviews with nine home‐care workers in June 2013 employed by independent agencies in a large city in northern England. Data were analysed thematically, based on the principles of grounded theory. Findings showed that significant time pressures limited home‐care workers in their ability to socially engage with service users at mealtimes, or provide them with anything other than ready meals. Enabling choice was considered more important than providing a healthy diet, but choice was limited by food availability and reliance on families for shopping. Despite their knowledge of service users and their central role in providing food, home‐care workers received little nutritional training and were not involved by healthcare professionals in the management of malnutrition. Despite the rhetoric of individual choice and importance of social engagement and nutrition for health and well‐being, nutritional care has been significantly compromised by cuts to social care budgets. The potential role for home‐care workers in promoting good nutrition in older people is undervalued and undermined by the lack of recognition, training and time dedicated to food‐related care. This has led to a situation whereby good quality food and enjoyable mealtimes are denied to many older people on the basis that they are unaffordable luxuries rather than an integral component of fundamental care.     

Non‐pharmacological interventions to prevent hospital or nursing home admissions among community‐dwelling older people with dementia: A systematic review and meta‐analysis

Older people with dementia more frequently experience episodes of hospital care, transferal to nursing home and adverse events when they are in these environments. This study synthesised the available evidence examining non‐pharmacological interventions to prevent hospital or nursing home admissions for community‐dwelling older people with dementia. Seven health science databases of all dates were searched up to 2 December 2019. Randomised controlled trials and comparative studies investigating non‐pharmacological interventions for older people with dementia who lived in the community were included. Meta‐analyses using a random‐effect model of randomised controlled trials were used to assess the effectiveness of interventions using measures taken as close to 12 months into follow‐up as reported. Outcomes were risk and rate of hospital and nursing home admissions. Risk ratio (RR) or rate ratios (RaR) with 95% confidence interval were used to pool results for hospital and nursing home admission outcomes. Sensitivity analyses were conducted to include pooling of results from non‐randomised trails. Twenty studies were included in the review. Community care coordination reduced rate of nursing home admissions [(2 studies, n = 303 people with dementia and 86 patient–caregiver dyads), pooled RaR = 0.66, 95% CI (0.45, 0.97), I² = 0%, p = .45]. Single interventions of psychoeducation and multifactorial interventions comprising of treatment and assessment clinics indicated no effect on hospital or nursing home admissions. The preliminary evidence of community care coordination on reducing the rate of nursing home admissions may be considered with caution when planning for community services or care for older people living with dementia.     

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.     

Partnership working by default: district nurses and care home staff providing care for older people

Older people residents in care homes that only offer residential care rely on primary healthcare services for medical and nursing needs. Research has investigated the demands that care homes staff and residents make on general practice, but not the involvement of other members of the primary healthcare team. This paper describes two consecutive studies completed in 2001 and 2003 that involved focus groups and survey methods of enquiry conducted in two settings: an England shire and inner London. The research questions that both studies had in common were (1) What is the contribution of district nursing and other primary care services to care homes that do not have on‐site nursing provision? (2) What strategies promote participation and collaboration between residents, care home staff and NHS primary care nursing staff? and (3) What are the current obstacles and aids to effective partnership working and learning? A total of 74 community‐based nurses and care home managers and staff took part in 10 focus groups, while 124 care home managers (73% of the171 surveyed) and 113 district nurse team leaders (80% of the 142 surveyed) participated in the surveys. Findings from both studies demonstrated that nurses were the most frequent NHS professional visiting care homes. Although care home managers and district nurses believed that they had a good working relationship, they had differing expectations of what the nursing contribution should be and how personal and nursing care were defined. This influenced the range of services that older people had access to and the amount of training and support care home staff received from district nurses and the extent to which they were able to develop collaborative and reciprocal patterns of working. Findings indicate that there is a need for community‐based nursing services to adopt a more strategic approach that ensures older people in care homes can access the services they are entitled to and receive equivalent health care to older people who live in their own homes.     

Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.     

Elderly care. Early warning system

In one area in Merseyside, primary care teams were only identifying elderly people with dementia in times of crisis, resulting in earlier than necessary residential or nursing home placements. Employing a social worker to work with primary care teams as a specialist care manager for this group has resulted in earlier and more appropriate care in the view of both carers and care workers. Following the appointment, interviews with 10 carers revealed that eight out of 10 patients were now receiving health and social care when nine out of 10 had previously received none.     

Information‐sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information‐sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information‐sharing between carers, older people and respite services. An explorative, cross‐sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information‐sharing with respite services changed over time across three temporal phases: ‘Reaching a point’, ‘Trying it out’ and ‘Settled in’. Proactive information‐sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information‐sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information‐sharing but traditional approaches will remain important.     

Management of pain in older people within the nursing home: a preliminary study

The provision of continuing care for older people has largely shifted from the hospital setting to the community, and nursing homes increasingly provide support for older people, many of whom exhibit multiple pathology and complex health and social care needs. However, the quality of pain management within this setting has been identified as an issue of concern. It has been estimated that approximately two-thirds of people aged 65 years and over experience chronic pain, and that the prevalence of chronic pain in nursing home residents is between 45% and 80%. However, there exist a number of barriers to the identification and management of chronic pain among older people resident in nursing homes, including sensory impairments in older people themselves and educational deficits among professionals. Such barriers need to be overcome if pain management is to be improved. The present study involved administering a pre-piloted postal questionnaire to the managers of 121 nursing homes within a geographically defined area. Sixty-eight (56%) were completed and returned. The questionnaire broadly covered the following: prevalence of chronic pain and use of interventions; assessment and management strategies; education and training; and communication barriers. Overall, 37% of nursing home residents were identified as experiencing chronic non-malignant pain (pain lasting longer than 3 months not caused by cancer) and 2% were reported as experiencing chronic malignant pain (pain lasting for more than 3 months caused by cancer). Paracetamol was identified as the most 'often' used analgesia for both pain modalities. Sixty-nine per cent of nursing homes did not have a written policy regarding pain management and 75% did not use a standardised pain assessment tool. Forty-four per cent of nursing homes provided education or training sessions for qualified staff and 34% provided this for care assistants. Forty per cent of qualified staff and 85% of care assistants had no specialist knowledge regarding the management of pain in older people. The present study confirms the need for the development of effective pain management strategies underpinned by appropriate training and education in order to meet the particular needs of older people.     

“It's a nice country but it's not mine”: Exploring the meanings attached to home,rurality and place for older lesbian,gay and bisexual adults

An ageing population across European nations, including the United Kingdom, brings with it new challenges for health and social care services and precipitates social policy initiatives targeted at meeting the care and support needs of a rapidly expanding number of older people. Ageing in place is one such policy driver—policy efforts that seek to promote the maintenance of older citizens residing in their own homes for as long as possible with minimal state intervention. Current generations of older lesbian, gay and bisexual (LGB) people have endured homophobia throughout their life histories, and sexual identity can shape perceptions and experiences of ageing, including experiences of home life, community and place. Our objective is to examine the meanings attached to home and place for older LGB adults living independently across three dimensions: rural places as “home,” connections to LGB communities, and social care provision in the home. We present interview findings from a mixed‐methods study on the social inclusion of older LGB adults in Wales. Twenty‐nine LGB‐identifying adults (50–76 years) self‐selected to participate in semistructured interviews between 2012 and 2013. Thematic findings from interviews indicate varying and contradictory meanings attached to home life in rural places, the importance of connection to communities of identity across geographical and online localities, and a high degree of ambivalence towards the prospect of receiving social care services in the home. We argue that a more nuanced understanding of the subjective meanings attached to home, rurality and community for older LGB people is needed to fully support LGB citizens to continue to live independently in their homes.     

Dementia, disability and contact with formal services: a comparison of dementia sufferers and non-sufferers in rural and urban settings

This paper is based on data from studies conducted in the City of Liverpool and in a rural area of North Wales, relating to people aged 75 years and over living in the community. It compares those identified in these studies as suffering from cognitive brain disorders with other older people identified as being cognitively unimpaired and looks at levels of competence with activities of daily living and the subsequent levels of contact with a range of health and social services personnel and other community workers. It shows that although levels of contact with formal services are generally higher for people with dementia than for non-sufferers, most of these differences are below the level of statistical significance. It was found that levels of contact for people receiving most services are low, especially for specialist mental health services and social work. The implications for community care are discussed, it is suggested that expansion of domiciliary care services for people with dementia and for their carers would demand more resources than are currently being made available but that it would be better value for money on a case by case basis.     

Why carers of people with dementia do not utilise out‐of‐home respite services

While many people with dementia require institutional care, having a co‐resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out‐of‐home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community‐dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non‐use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non‐use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non‐use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out‐of‐home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.