Attitudes towards people with intellectual disabilities: A comparison of young people from British South Asian and White British backgrounds

Research with South Asian families of individuals with intellectual disabilities (ID) suggests an increased fear of stigma and isolation from the community. Evidence on attitudes towards ID among the wider community is very limited and was the focus of the present study. Responses were collected from 737 college students aged 16–19 using the Community Living Attitudes Scale – ID version. Results indicated that British South Asians (n = 355) were less in favour of the social inclusion of people with ID than White British young people (n = 382). British South Asian adolescents were more likely to hold the view that people with ID should be sheltered and not empowered. It is proposed that future inclusion policies integrate ethnic minority views whose religious and cultural values do not always conform to the core values of social inclusion policies. It is also proposed that culturally specific school based interventions could be introduced with the aims of decreasing stigma and fostering attitudes in line with the aims of normalisation.     

Psychological well-being in Black Caribbean,Black African,and White adolescents in the UK Medical Research Council DASH study

BACKGROUND: It is not known if adolescents from diverse groups of Black African origin experience similar or different psychological well-being. AIMS: To examine adolescent self-report of psychological well-being among Black African and White UK origin groups and to assess the extent to which family type and social deprivation influence any ethnic differences. METHOD: The 25-item Strengths and Difficulties Questionnaire (SDQ) was used to assess psychological well-being in a study of 6,632 11-13 year-olds in 51 schools in London. RESULTS: Overall, family type (but not material deprivation) was an important independent correlate of psychological well-being. Nigerian/Ghanaian boys reported the lowest mean Total Difficulties Score (TDS) compared to White boys (regression coefficient (95% CI) -2.09 (-2.83, -1.35) p < 0.001). They also had significantly higher mean pro-social behaviour score, and were at reduced risk of a high (i.e., likely psychological distress) TDS score. TDS was also significantly lower than Whites for other African boys and girls. Other African and mixed ethnicities were protective factors against risk of psychological distress for girls. CONCLUSIONS: Black African boys and other African boys and girls reported the most favourable psychological well-being scores. The influence of family type on mental health may operate differently for girls compared to boys and for Africans compared to other ethnic groups.     

Suicidal ideation in family carers of people with dementia

Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.

Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.

Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.     

Social factors and depression in carers of people with dementia

BACKGROUND: Research has highlighted the influence of psychosocial factors on the wellbeing of carers of people with dementia. This study aimed to investigate the interrelationships between life events, depression and social support in carers of people with dementia. METHOD: Participants were 72 carers of people with dementia. They were interviewed using the Bedford College Life Events and Difficulties Schedule and the Geriatric Depression Scale. RESULTS: The results showed that 31 (43%) of carers were depressed. Factors associated with depression in carers were a lack of confiding relationship, depression in the person with dementia, and living with the person with dementia. CONCLUSIONS: Carers of people with dementia appear more vulnerable to depression in the context of the caring experience rather than threatening life events.     

The importance of music for people with dementia: the perspectives of people with dementia,family carers,staff and music therapists

Objectives: Despite the popularity of music-based interventions in dementia care, there is a limited knowledge of how and why people with dementia find music beneficial for their well-being. A qualitative study was conducted to develop further insights into the musical experiences of people with dementia and explore the meaning of music in their lives.Method: Separate focus groups and interviews with (1) care home residents with dementia and their families, (2) day hospital clients with dementia, (3) care home staff, and (4) music therapists, were conducted. The findings of the thematic analysis were investigated further in the light of psychosocial factors with the aim of developing a theoretical model on music in dementia.Results: Six key themes were identified. The accessibility of music for people at all stages of dementia, close links between music, personal identity and life events, the importance of relationship-building through music making were particularly highlighted as valuable. The psychosocial model of music in dementia was developed. The model revealed the importance of music to support the personal psychology of people with dementia and the social psychology of the care home environment.Conclusion: The effects of music go beyond the reduction of behavioural and psychological symptoms. Individual preference of music is preserved throughout the process of dementia. Sustaining musical and interpersonal connectedness would help value who the person is and maintain the quality of their life.     

Social care and support needs of community-dwelling people with dementia and concurrent visual impairment

Objectives: This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs.

Method: Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed thematically.

Results: Three themes are presented. (1) Social care needs: having dementia can reduce an individual's ability to cope with their visual impairment, and lead to increased dependency and reduced daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported with learning to use unfamiliar technology and the cost of visual impairment aids, and for some, the presence of dementia made visual impairment aids unusable and vice versa. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home facilitated independence, and continuity of paid carers/volunteers facilitated the caring relationship between the individual and staff/volunteer.

Conclusion: Care workers will better serve older people if they are aware of the social care and support needs that arise from having both dementia and visual impairment.     

Knowledge of dementia among South Asian (Indian) older people in Manchester, UK

OBJECTIVES: The aim of this study was to examine knowledge of dementia in South Asian older people, as compared with Caucasian older people. METHODS: Attendees, not known to suffer from dementia, of one South Asian and two predominantly Caucasian day centres for older people in Manchester (UK) were asked to complete the Dementia Knowledge Questionnaire (DKQ). The DKQ was translated into Gujarathi and Urdu by the professional translators. RESULTS: One hundred and ninety-one DKQs from Indian and 55 DKQs from Caucasian (white UK/Irish/European) older people were included in the analyses. Knowledge of dementia was poor in both Indian and Caucasian older people, especially so in the former. The median (25th-75th percentile) total DKQ scores were 3 (2-5) in Indians and 6 (3.5-9) in Caucasians (p < 0.001). Indian older people showed significantly less knowledge about basic aspects (p < 0.001) and epidemiology (p < 0.001) of dementia when compared to Caucasian older people. Both groups faired equally badly on questions about aetiology (p = 0.91) and symptomatology (p = 0.66). Indian older people were less aware of personality, reasoning, and speech being the affected in dementia (p < 0.001, p < 0.001 and p = 0.04, respectively). CONCLUSION: Indian older people in Manchester (UK) do not seem to have sufficient knowledge about dementia, which may be one of the reasons for their relative absence in the local dementia treatment clinics.     

The quality of life of people with dementia and their family carers

Background: We aimed to identify factors associated with the quality of life (QoL) of 'persons with dementia' (PWDs) and their family carers. Method: Two-hundred and thirty dyads of PWDs and their family carers were included. The PWDs were assessed with the Neuropsychiatric Inventory (NPI-Q), two Activities of Daily Living (ADL) scales, the Cornell Scale and the QoL-Alzheimer's Disease scale (QoL-AD; self- and proxy-reported scores). The carers were assessed with the QoL-AD and the Geriatric Depression Scale. Results: Factors associated with self-reported QoL were depression (β = -0.26, p < 0.001) and impaired ADL (β = -0.26, p < 0.001) and with proxy-rated QoL were NPI (β = -0.18, p = 0.02), depression (β = -0.32, p < 0.001) and impaired ADL (β = -0.43, p < 0.001). Factors associated with QoL in carers living together with the PWDs were depression (β = -0.56, p < 0.001) and having a hobby (β = 0.19, p = 0.01), whereas depression was associated with QoL in those who lived separately from the PWD (β = -0.60, p < 0.001). Conclusion: Depression and impaired ADL were associated with the self- and proxy-rated QoL of the PWDs, whereas depression in the carers negatively affected their QoL.     

The relation of entrapment, shame and guilt to depression, in carers of people with dementia

There is increasing research exploring depression in carers of people with dementia. This study explored the relation of entrapment, shame and guilt to depression in a group of 70 carers of those with dementia. As in other studies the experience of entrapment in the role was highly related to depression. Moreover, experiences of shame relating to self-criticism, other people's expectations and the fear of their criticism were significantly related to depression, entrapment and guilt. Guilt however, as focused on the fears of harming others, letting others down and sense of responsibility, was not associated with depression or entrapment. Depression in carers may relate in part to feeling trapped in a role but also being vulnerable to criticism and feelings of inadequacy in that role. In this study, degree of behavioural disturbance/dependence was not found to be significantly associated with any of the research variables.     

Younger people with dementia: diagnostic issues,effects on carers and use of services

Objective. To determine difficulties experienced by carers of younger people with dementia. Design. Cross-sectional self-report questionnaire survey. Participants. 102 eligible carers of persons less than 65 years of age with dementia, recruited through support groups and clinicians' referrals. Main outcome measures. Problems with diagnostic process; professionals/services consulted; psychological, physical, occupational and financial impact of illness on carers and children; use of and satisfaction with services. Main results. Diagnostic problems were reported by 71% of carers. Mean time until diagnosis was 3.4 years (SD 2.8) after consulting 2·8 (1·4) professionals. Carers reported frustration (81%) and grief (73%). Adverse psychological effects were common, more so in female than male carers (p<0·01). The younger the carer, the more psychological and physical effects were experienced (p<0·01). Only 8% of carers considered that their children had encountered no problems because of the dementia. Of 61 working carers, 59% reduced their hours or stopped working after diagnosis, and 89% of all carers had experienced financial problems subsequent to diagnosis. Most carers (89%) had used a support service, but 25% had never used community support, 32% had never used respite. Proportions of carers rating services as ‘good’ ranged between 43 and 100%. Conclusions. Younger people with dementia, and their carers, face difficulties in obtaining a diagnosis. Carers also experience psychological problems, financial worries, loss of employment and family conflict, and their children are affected. Most carers had used services, but some dissatisfaction existed. © 1998 John Wiley & Sons, Ltd.     

The needs of older people with dementia in residential care

BACKGROUND: People with dementia often move into care homes as their needs become too complex or expensive for them to remain in their own homes. Little is known about how well their needs are met within care homes. METHOD: The aim of this study was to identify the unmet needs of people with dementia in care and the characteristics associated with high levels of needs. Two hundred and thirty-eight people with dementia were recruited from residential care homes nationally. Needs were identified using the Camberwell Assessment of Needs for the Elderly (CANE). RESULTS: Residents with dementia had a mean of 4.4 (SD 2.6) unmet and 12.1 (SD 2.6) met needs. Environmental and physical health needs were usually met. However, sensory or physical disability (including mobility problems and incontinence) needs, mental health needs, and social needs, such as company and daytime activities, were often unmet. Unmet needs were associated with psychological problems, such as anxiety and depression, but not with severity of dementia or level of dependency. CONCLUSION: Mental health services and residential home staff need to be aware that many needs remain unmet and much can be done to improve the quality of life of the residents with dementia.