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.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.     

Caring hours and possible need for employment support among primary carers for adults with mental illness: Results from an Australian household survey

Intensive unpaid caring is associated with greater likelihood of not being employed, but impacts for mental health carers specifically remain unknown. This study aimed to: (a) examine the association between caring intensity and not being employed for primary mental health carers, (b) ascertain whether this relationship differs from that for other disability carers, (c) enumerate Australian primary mental health carers with a possible need for employment support and (d) describe these carers’ unmet support needs and barriers to employment. Co‐resident, working age primary mental health (n = 137) and other disability carers (n = 821) were identified in the Survey of Disability, Ageing and Carers (collected July‐December 2015). Multiple logistic regression analyses examined associations between levels of caring intensity (1–9, 10–19, 20–39, 40+ hr/week) and not being employed. A ‘possible need for employment support’ indicator was derived from information about current employment status, caring hours, past impact of caring on employment and desire for more work or workplace accommodations. After controlling for demographic and caring role factors, mental health carers providing 40+ hr of care weekly had greater odds of not being employed compared to carers providing <10 hr (AOR 13.38, 95% CI: 2.17–82.39). For other disability carers, the odds of not being employed were also higher among those providing 20–39 hr of care (AOR 3.21, 95% CI: 2.18–4.73). An estimated 54.1% (95% CI: 43.1–64.8) of carers had a possible need for employment support, with the proportion increasing as level of caring intensity increased. Of carers who were not employed, 42.2% (95% CI: 30.3–55.0) reported a desire to work, and the main reported barrier was no alternative care arrangements or disruption to the person supported. Findings suggest that improving employment participation for mental health carers requires a greater balance between unpaid care and access to formal services for people with mental illness.     

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.     

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.     

Practitioner opinions of crisis plans within early intervention in psychosis services: A mixed methods study

The efficacy of crisis planning in mental health services is contested. As recovery and self-management are core to Early Intervention in Psychosis (EIP) services and the Care Programme Approach (CPA), the views of EIP practitioners of the most useful aspects of crisis planning can inform this vital aspect of practice. We conducted a mixed methods study using a national cross-sectional survey (n = 70) and semi-structured interviews (n = 12) with EIP practitioners in England in 2019. Data were analysed using non-parametric tests and thematic analysis. A Joint Crisis Plan (JCP) template was used as a benchmark to judge current practice by (Sutherby et al., 1999; Henderson et al., 2004; Thornicroft et al., 2013). The most useful crisis plan themes identified by practitioners included early warning signs, triggers and helpful treatments, although not all elements were considered useful. Additionally, the interviews identified that collaboration with clients, carers and other services; personalisation; and self-management were all considered important in effective crisis planning. The practitioners also identified barriers to effective crisis planning, such as the electronic records system, lack of time and lack of available service provision. The research highlighted the important aspects of EIP and was significant in impacting the service and wider EIP network further. While crisis planning is a significant part of EIP, it does not appear to be consistently applied in practice. Fully implementing collaborative crisis planning in EIP services may require changes to policy, practice and local systems to ensure that crisis planning is as effective as possible.     

A socially prescribed community service for people living with dementia and family carers and its long-term effects on well-being

Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities. People with dementia and family carers were recruited from a community centre in the North West of England to complete in this study. Participants provided demographic information and completed the Short Warwick-Edinburgh Mental Well-Being Scale at baseline, and after 3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation score for information on participants’ socioeconomic background. Data were analysed using paired samples t-tests to compare well-being scores between baseline and follow-up assessments. A total of 25 people with dementia (n = 14) and family carers (n = 11) participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing the 3- and 6-month follow-up respectively. Some reasons for discontinuation were lack of transport and other commitments. Most participants lived in some of the most disadvantaged neighbourhoods. Compared to baseline, well-being was significantly higher at both follow-ups. This is one of the first studies reporting the benefits of a social prescribing service in dementia. Future implementation work needs to design an implementation plan so that the service can be implemented in other community centres across the country.     

‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community‐based care for people with dementia can be challenging. Workers often lack training in dementia‐specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person‐centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in‐depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers’ understanding of dementia, person‐centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers’ lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.     

“Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14–25 years (N = 13), from Western Australia through in‐depth semi‐structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. “Lessons from the experience” articulates the perceived benefits of the role and the themes: “navigating competing demands,” “desire for normalcy” and “lost in the system” capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.     

Knowing the diagnosis and counselling the relatives of a person with dementia: the perspective of home nurses and home care workers in Belgium

Home nurses and home care workers share the care for a person with dementia with family caregivers, and are confronted with their needs for medical and service-related information, for advice on how to cope with the behaviour changes, and for emotional support. The first objective of the present study was to describe some of the conditions for effective counselling, such as the perception that knowing the diagnosis has positive consequences for the formal caregivers. A second objective was to describe the formal caregivers' counselling practice, and ascertain its relationship with the psychological variables of attitudes, self-efficacy and subjective norm. A postal questionnaire was sent to 287 home nurses and 1259 home care workers in a defined region of Belgium; the questionnaire was returned by 169 home nurses (58.9% response) and 665 home care workers (52.8% response). The Theory of Planned Behaviour was the organising framework which underpinned the development of the instruments. Only the 168 home nurses and 601 home care workers reporting experience with caregiving to people with dementia were included in the analysis. Formal caregivers indicated that knowing the diagnosis was important, but it could facilitate or hinder caregiving. They were able to describe behavioural characteristics which are indicative of dementia, but only in a limited way, and their strategies to uncover the diagnosis were also limited. Formal caregivers reported that they supported family members emotionally, advised about communication with the person with dementia and informed family caregivers about services. However, providing family caregivers with information about dementia lagged behind these forms of support. In general, nurses scored higher than home care workers. Multiple linear regression analysis was used to investigate the relationships between self-reported practice and the concepts of the model. In both professions, attitudes and self-efficacy were found to be strong independent predictors, and the implications for practice are discussed.     

Family caregivers' and professionals' experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.     

Carers' reflections on nursing home and NHS long-stay care for elderly patients

The aim of this study was to compare the perceptions of carers of elderly long-stay care patients who are now in nursing homes in three health districts in a former Regional Health Authority and in remaining long-stay geriatric National Health Service (NHS) wards. One hundred and ninety-eight nursing home carers (78%) and 128 NHS carers (83%) were interviewed by telephone, using a semi-structured questionnaire and open questions. The impact of caring at home was shown to be greater on NHS than on nursing home carers. Most were satisfied with the care, staff and atmosphere of the nursing home or hospital. Nursing homes were perceived to offer better ‘hotel’ facilities and a more pleasant environment. They were seen as better at respecting patients' privacy. The NHS was regarded as superior in offering clinical and rehabilitative services. Most participants thought the institution was the right place for their relative, although in general, it was thought to be better to care for elderly people at home. ‘Care in the community’ was supported, but carers were realistic about alternatives when informal care ceased to be a reasonable option. There was little ‘choice’ between public and private sector care. For many patients, entry into the institution followed directly from an acute hospital admission. The only choice was between care in a long-stay facility or remaining at home, with the patient becoming increasingly dependent and the carer becoming increasingly unable to cope. The formal aspect of community care should be to be organized rationally and accepted as a valid response to the needs of some dependent elderly patients and their carers.     

Unmet home healthcare needs and quality of life in cancer patients: a hospital‐based Turkish sample

Home healthcare services in Turkey are provided primarily to patients that are bedridden or seriously disabled. There are no such services integrated with hospital services that are specifically designed for cancer patients. The present study aimed to explore the home healthcare needs of cancer patients and their experiences related to unmet home healthcare needs. The study included 394 adult cancer patients who were followed up at the surgical oncology department of a university hospital. A 37‐item, study‐specific questionnaire and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire for cancer patients (EORTC‐QLQ‐C30) were administered, and patient clinical records were evaluated. Home healthcare was provided primarily by the patients' immediate family members; the professional home healthcare usage rate was only 2.8%. Patient quality of life (QoL) was negatively affected by cancer, especially those with stage three and four disease. The frequency of the need for home healthcare services due to disease‐related health problems during the 30 days prior to administration of the questionnaires was as follows: pain (62.9%), surgical wound care (44.9%), injection of therapeutics (52.3%), gastrointestinal complaints (51.8%), anxiety (87.1%), psychosocial assistance (77.2%) and information about cancer (94.4%). In the absence of home healthcare services, the patients primarily used institutional healthcare services to meet their needs; otherwise, their needs were not met. The physical and psychosocial problems that cancer patients experience could be solved in most cases by professional home healthcare services. Hospital‐integrated home healthcare services might not only improve cancer patient QoL but might also increase the effectiveness of hospital‐based healthcare services.     

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.