Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review

Background: Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative's behaviours contribute to the success of support programmes. Aims: To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered. Method: A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012. Results: We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in ‘feeling bereft’; and perceptions of transgressions against social norms associated with ‘misunderstandings about behaviour’ in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging. Conclusions: Family carers' perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their ‘personhood’. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers

Family support for stroke: one year follow up of a randomised controlled trial

Background: There is evidence that family support can benefit carers of stroke patients, but not the patients themselves. Objective: To extend the follow up of a single blind randomised controlled trial of family support for stroke patients and carers to one year to ascertain whether there were any late effects of the intervention. Methods: The study was a randomised controlled trial. Patients admitted to hospital with acute stroke who had a close carer were assigned to receive family support or normal care. Families were visited at home by a researcher 12 months after the stroke, and a series of questionnaires was administered to patient and carer. Results: The benefits to carers mostly persisted, though they were no longer statistically significant because some patients were lost to follow up. There was no evidence of any effects on patients. Conclusion: Family support is effective for carers, but different approaches need to be considered to alleviate the psychosocial problems of stroke patients. Abbreviations: FSO, family support organiser; SF-36, short form 36 item health assessment questionnaire Keywords: caregiver; family support; stroke In recognition of the impact that stroke has on carers as well as patients,1 services such as Stroke Association family support have been developed in the United Kingdom which provide information, emotional support, and liaison with other services. The service maintains contact through a combination of home and hospital visits and telephone calls. In the Oxford family support trial, we found that this service was associated with significantly improved quality of life of carers at follow up six months after the stroke, but had no effects on patients.2 Other randomised controlled trials of the service in other areas have also found no evidence of benefit to patients with follow up varying from four to nine months after recruitment.3,4 The lack of benefit to patients may be attributable to the short duration of follow up in these trials. The service usually maintains contact with a family for a year, and some patients spend a significant proportion of the first six months in hospital, during which time family support might be anticipated to have less impact. We carried out a second follow up of participants in the Oxford trial to investigate the effects of family support on patients and carers one year after the stroke

The impact of information and communication technology on family carers of older people and professionals in Sweden

Government policy in Sweden, as in other developed countries, pays increasing attention as to how best to support the family carers of older people. New and innovative means of support, such as information and communication technology, are emerging. This paper explores the perceived benefits of, and barriers to, information technology as a means of supporting family carers of older people. Following a brief overview of the care-giving literature, with particular reference to the Swedish context, interview and questionnaire data collected from 34 families who took part in the Swedish ACTION project are used to explore the role of user-friendly information and communication technology to inform and enable family carers of older people to exercise choice, to care more effectively and to work in partnership with professionals. Interview data from two groups of professionals that utilised ACTION are also examined to throw light on its potential benefits for both carers and professionals. Consideration is given to the barriers to using information technology, and to identifying those carers most likely to benefit. Areas for further development are the need for practitioners' education and a wider range of programmes to address carers' diverse needs. Clearly, lessons learned from the Swedish project have wider relevance, given that new forms of support are being developed in most technically advanced countries

Approaching the end of life and dying with dementia in care homes : the accounts of family carers.

Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition

A service evaluation of parent adherence with dysphagia management therapy guidelines: Reports from family carers supporting children with complex needs in Greece

Purpose: Many children with complex needs exhibit eating, drinking and/or swallowing disorders (dysphagia). These children often have associated learning needs, and require assistance from carers for daily tasks such as eating and drinking. The aim of this study was to identify which strategies to manage dysphagia were challenging for family carers, and reasons for any non-adherence. Method: In this service evaluation researchers observed carers during mealtimes, and investigated carer opinions of strategies used to minimise the risks of dysphagia. Eight children with complex needs aged 3.4 - 7.5 years and their primary family caregiver participated. Results: Adherence with speech and language pathologists’ dysphagia recommendations overall was over 50% in all but one case. For specific strategies, the highest adherence was observed for diet modifications of foods (89%), communication during the mealtime (83%), amount of food to present (81%) and the pacing of fluids and foods (81%). Lower levels of adherence were identified in relation to postural management (58%), environmental changes (58%), utensils (56%) and preparatory strategies (49%). Conclusion: Adherence with use of strategies to support mealtimes was over 50% in all but one case. Findings suggest that support is essential in order to promote safe mealtimes, reduce family carers’ stress and increase knowledge, confidence and adherence in implementing dysphagia guidelines in the family home

The experience of family carers attending a joint reminiscence group with people with dementia: A thematic analysis

Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers' experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending 'Remembering Yesterday Caring Today' groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia's experience; and learning and comparing. Family carers' experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care

An evaluation of the role of the Admiral Nurse : a systematic evidence synthesis to inform service delivery and research

Two thirds of people with dementia live in the community and receive support from family members. There is a great deal of evidence to suggest that caring for a person with dementia impacts on the health and wellbeing of family carers. Despite this the provision of funded support for family carers is often limited or inadequate. Admiral Nurses, developed in the 1990s, were specifically designed by the charity for dementia (now Dementia UK) to support the family carers of people with dementia. Admiral Nurses are mental health nurses specialising in the care of people with dementia. They are mainly employed by local providers of care for people with dementia but dementia UK is involved in setting up new posts and providing ongoing practice development. There are currently around 100 Admiral Nurses employed in England. In addition the charity has a national helpline provided by experienced Admiral Nurses. The evidence synthesis presented here was commissioned by Dementia UK in order to establish what is currently known about the scope, nature and effectiveness of Admiral Nurse

How do kinship (family and friends) foster carers experience their role and working relationships within the children’s workforce? (Sharing our experience, Practitioner-led research 2008-2009; PLR0809/054)

This research was undertaken in a London local authority and consisted of semi-structured interviews with five kinship foster carers approved by the local authority. The research used a qualitative approach consisting of one-off, face to face interviews with the aim of finding out how kinship foster carers experience their role and working relationships within the children’s workforce. Kinship foster carers are family and friends who look after children and young people in public care, on behalf of the local authority and within the terms of the Children Act 1989. A semi-structured interview schedule was devised to address the areas of interest, with a series of open questions and prompts. The interviews, with the participant’s permission, were digitally recorded alongside contemporaneous notes being made, and were subsequently written up to produce the dataset for the analysis. The main findings from the research include: • The carers in this study were very positive about the support they received from their supervising social workers, but were critical of the fact that children were often not provided with a consistent social worker. • Some carers in this study were dissatisfied with the level of financial remuneration. • In terms of the working relationship with education and health professionals, all participants reported positive experiences, but while this study sought to see how kinship carers were viewed as part of the children’s workforce, the carers themselves wanted to be viewed as ‘family’ and not professionals. • In relation to the possibility that relative and non-relative kinship carers experienced their role differently, there is no evidence from this brief study to suggest that this may be the case. Both relative and nonrelative carers demonstrate a warmth and commitment to ‘their’ children, reinforcing the importance of kinship care as a preferred placement option for many children

Reducing gender inequalities to create a sustainable care system

Women mainly provide family care, but as women’s economic opportunities increase they will not continue to bear the costs of providing care unaided. To create a sustainable care system, care and carers must be better supported and more highly valued to involve more men in caring and reduce gender inequalities.Key pointsMost care is still provided through family obligations, unpaid but not free, since it is ‘paid for’ by reduced opportunities for carers. Family carers are mostly women, because of gender norms and also the gender pay gap, which makes it more costly for men to reduce employment hours.As women move increasingly into employment, family carers’ demand for employment will continue to rise, as will the need for paid care. The UK’s long working hours make it difficult to combine caring with full-time employment, but part-time pay rates are often considerably lower.Four in five paid carers are women, in a sector having increasing difficulties with recruitment and retention. The care sector’s poor pay is a large contributor to the gender pay gap.Privatisation of residential and domiciliary care has produced a labour market with insufficient opportunities for training and career development. This is unlikely to attract men, and women will increasingly leave as their employment opportunities improve.This situation will be unsustainable for meeting society’s care needs unless:- pay and conditions improve to retain more women and encourage men to enter the care sector;- unpaid carers receive financial and other support, and working hours are reduced for all, so that more people can combine family care with employment;- cash payments to individuals are not allowed to drive out funding for vital community services; and- policies are judged by the quality of care they support and how much they encourage a stable, less gender-divided workforce, as well as value for moneyAny other solution would be unworkable, unfair and inconsistent with government commitments to reduce gender inequalities.Costs will continue to rise as the paid care sector grows, since to recruit and retain care workers, wages will have to keep up with those elsewhere. Because rising care costs are an effect of rising productivity elsewhere in the economy, paying for them will still let disposable incomes increase. Spending more on social care can be afforded.</br

Caring in Kent: Patterns and Profiles, Evidence from the Kent Health and Lifestyle Survey, 2005

The ‘Caring in Kent’ report draws on the results of a Kent wide ‘Health and Lifestyle Survey’ conducted in 2005; this included a module on caring. This enables a picture of caring to be reported including: a general profile of carers, levels and types of care-giving, carers’ health, and the level and types of support they receive. ‘Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner’. The increasingly recognised importance of the role of the ‘informal carer’ is - in good part - due to the rising proportion of older people in the UK population. Not only do people live longer but many experience a number of chronic conditions; these require support from family members if the older person is to remain living in the community