Service utilisation and family support of people with dementia: a cohort study in England.

OBJECTIVES: This study aimed to compare costs of caring for people with dementia in domiciliary and residential settings, central England. METHODS: A cohort of people with dementia was recruited during a hospital stay 2008-2010. Data were collected by interview at baseline, and 6- and 12-month follow-up, covering living situation (own home with or without co-resident carer, care home); cognition, health status and functioning of person with dementia; carer stress; utilisation of health and social services; and informal (unpaid) caring input. Costs of formal services and informal caring (replacement cost method) were calculated. Costs of residential and domiciliary care packages were compared. RESULTS: Data for 109 people with dementia were collected at baseline; 95 (87.2%) entered hospital from their own homes. By 12 months, 40 (36.7%) had died and 85% of the survivors were living in care homes. Over one-half of people with dementia reported social care packages at baseline; those living alone had larger packages than those living with others. Median caring time for co-resident carers was 400 min/day and 10 h/week for non co-resident carers. Residential care was more costly than domiciliary social care for most people. When the value of informal caring was included, the total cost of domiciliary care was higher than residential care, but not significantly so. Carer stress reduced significantly after the person with dementia entered a care home. CONCLUSIONS: Caring for people with dementia at home may be more expensive, and more stressful for carers, than care in residential settings.

'You're HIV positive': perinatally infected young people's accounts of the critical moment of finding out their diagnosis.

This paper presents the recollections of 28 young people (15-24 years old) of formally learning that they had acquired HIV perinatally. Prior to the naming of their illness, many participants had experienced repeated biographical disruption through ill health and other major life events. However, the critical moment in their HIV trajectory was when they were told their diagnosis. How information about their diagnosis was managed previously, often disguised, combined with the ways in which the disclosure process was handled communicated to young people the inherent dangers and stigma associated with revealing their HIV status to others. The formal disclosure occasion also signalled to most participants the route of their HIV infection as well as previously hidden health information about family members. Although some young people discovered their diagnosis in an unplanned way, most described the disclosure of their HIV status as a structured event, usually a formal telling with those in authority naming the condition. This even applied to those for whom the discovery that they were HIV positive was a process that happened over time. This paper describes their memories of the disclosure event which for half took place over the age of 12. They received messages conveying the imperative to keep this information a secret to avoid being stigmatised and to protect themselves and their families. They described subsequent feelings of isolation and distress. Policy-makers and clinicians need to consider the WHO disclosure recommendations whilst taking into account individual circumstances.

A 12-month follow-up study of people with dementia referred to general hospital liaison psychiatry services.

BACKGROUND: new services for patients with dementia in general hospitals are being widely developed. Little is known of outcomes after hospital for such patients. OBJECTIVE: to establish outcomes for patients with dementia referred to general hospital psychiatric services. DESIGN: prospective cohort study. SETTING: two UK general hospitals. SUBJECTS: referrals with dementia to liaison psychiatric services. METHOD: eligible referrals (n = 112), and their carers, were assessed during admission, and at 6 and 12 months, using battery of health measurements. RESULTS: mortality at 6 months was 31% and at 12 months 40%. At baseline, 13% lived in a care home, rising to 84% by 6 months. Quality of life scores remained stable over 12 months, while carer stress fell significantly. Baseline clinical and demographic variables did not predict quality of life or carer stress at 6 and 12 months. CONCLUSIONS: dementia liaison services in general hospitals currently focus on poor outcome cases.

Hearing the voices of people with high support needs.

This article draws on findings from a study commissioned by the British charity, The Joseph Rowntree Foundation, to explore the needs and aspirations of older people who for whatever reason require a high degree of assistance. The study explored the personal aspirations of a small diverse sample (n=26) of hitherto un-researched people living in different parts of the UK. Most were over 85 years of age, with varied ethnicity, health status, social care needs, financial status and lifestyle. Many participants were receiving input from statutory health and social care services and were perceived by others and often themselves to have high support needs. Accessible research methods were used to enable participants to specify those factors for well-being most central to their own lives and preferences. The study found commonalities of aspiration in relation to physical, social and psychological aspects of their lives, but also unique descriptions of their individual concerns. In striving to maintain a sense of self worth, participants accepted that some choices were not realistic for them personally. Positive relationships with care-givers were an essential enabler for some. In many cases negotiation has the potential to produce simple and cost-effective ways of addressing individual aspirations and improving quality of life.

Patient and proxy measurement of quality of life among general hospital in-patients with dementia.

BACKGROUND: We aimed to investigate quality of life ratings among people with varying severity of dementia and their carers, recruited in general hospital. METHOD: We recruited 109 people with dementia, and their proxies (carers), from psychiatric referrals of inpatients in two general hospitals in England. From patients, we gathered data on quality of life (QoL-AD and EQ5-D) and depressive symptoms, and from proxies we gathered data on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress. RESULTS: Completion rates for both measures were progressively lower with increasing dementia severity. Patients rated their quality of life more highly than proxies on Qol-AD (patients=32.2, CI=30.7-33.7, proxies=24.7, CI=23.8-26.0, p<0.001) and on EQ5D (patients=0.71, CI=0.64-0.77, proxies=0.30, CI=0.22-0.38, p<0.001). For proxy EQ5D, impaired instrumental ADLs (p=0.003) and more severe dementia (p=0.019) were associated with ratings, while for proxy QoL-AD, only more severe dementia (p=0.039) was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress (p=0.01). Lower patient QoL-AD scores were associated with patient depression (p=0.001), impaired activities of daily living (p=0.02) and proxy psychiatric symptoms (p=0.002). CONCLUSIONS: Among patients with moderate to severe dementia in general hospital, proxy measures of quality of life are the only practical option. Patients and proxies appear to have very different concepts of quality of life in dementia.

Cultural identity and belonging in later life: is extra care housing an attractive concept to older Jewish people living in Britain?

The extra care housing concept of supported independence within a caring community is one that may offer much to minority communities, particularly those with changing patterns of family care. The context for this study is a UK population which is ageing, with a relatively small but growing number of older people within religious and ethnic minority groups who have needs specific to their cultural identity in addition to those in common with the majority. In considering its need for new forms of later life accommodation, the British Jewish community is looking for models that are acceptable both in terms of specifically Jewish cultural requirements and with respect to 'mainstream' middle class expectations of amenity, service, and social inclusion. This article presents findings of sixteen focus groups with middle-aged and older members of Jewish communities in London and the south east of England, and reflects on their attitudes to specificity in cultural provision in extra care.

The impact of a distance learning death and dying course: an analysis of student self-reported changes.

Educational programmes are under way to improve knowledge, awareness and skills in holistic end-of-life care. Not all people can access education and continued professional development in a conventional face-to-face setting. The UK Open University's distance learning course entitled 'Death and Dying' (K260) attracts a broad spectrum of British and foreign students, including those who undertake the course for work-related purposes, and those who have a personal or academic interest in the area. This study explored students' self-reported satisfaction with the course primarily whether respondents perceived changes in their attitudes or practices. Two questionnaires were posted to students registered on K260, the first at the beginning of the course and the second, to those who returned the first questionnaire, following the final examination. Most respondents reported satisfaction with the quality and content of K260. Irrespective of whether respondents worked with dying or bereaved people, most felt that the course: encouraged reflection on personal beliefs and/or attitudes towards death and dying; furthered their knowledge of palliative care; increased their understanding of relevant ethical, legal and moral issues; raised their awareness of religious and cultural issues; and helped them develop skills to deal more effectively with dying and bereaved people.

Caring for dying Jewish people in a multicultural/religious society.

Despite an increased emphasis on racial awareness in health-care settings, religious customs that disrupt routines still unsettle nurses and other health workers. Providing education about the beliefs of different ethnic minorities and the significance for the different parties of practising specific death-related rituals could both prepare nurses for what they may encounter and increase their understanding of the responses of patients and their relatives. This article explores Jewish beliefs and practices relating to caring for dying and recently deceased people as an example of such death-related rituals. It is suggested that nurses should not be afraid of asking direct questions about levels of religious observance of the relatives of the dying Jewish person. Good communication skills and an openness to accept differences are essential if nurses are to respond appropriately to reduce the distress bereaved people from ethnic minorities experience when carrying out religious practices.