Dementia knowledge among physiotherapists in Nigeria.

BACKGROUND: With the growing population of older adults in Nigeria comes a simultaneous rise in the incidence of dementia in the country. Adequate knowledge of dementia is needed to effectively administer interventions for persons living with dementia. Physiotherapy is one of the professions providing care for people with dementia. The aim of this study was to evaluate the knowledge of dementia among physiotherapists in Nigeria. METHODS: An online survey method was used to collect data from the sample population of practicing physiotherapists in Nigeria. Data was collected using the 21-item Dementia Knowledge Assessment Tool Version Two (DKAT2) and the respondents also provided some demographic information. Mann Whitney test, Kruskal Wallis test and Spearman's rho correlation were used to test for association between the DKAT2 scores and the demographic variables and this association was further explored with multiple linear regression analysis. RESULTS: A total number of 223 physiotherapists participated in this study. The findings of the study show that there is limited knowledge of dementia among the physiotherapists. Number of years of professional experience and specialty groups predicted significantly higher knowledge scores. CONCLUSION: The knowledge deficits found among physiotherapists in Nigeria indicate that older adults living with dementia might not be receiving the best evidence-based physiotherapy treatments for their condition. This research therefore advocates for an educational intervention to be carried out within the physiotherapy profession in order to improve the quality of services rendered to their patients.

Dementia awareness, beliefs and barriers among family caregivers in Pakistan.

OBJECTIVES: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. METHODS: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35-80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. RESULTS: Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. DISCUSSION: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care.

Experiences of People With Dementia in Pakistan: Help-Seeking, Understanding, Stigma, and Religion.

BACKGROUND AND OBJECTIVES: The prevalence of dementia will increase in low- and middle-income countries like Pakistan. Specialist dementia services are rare in Pakistan. Public awareness of dementia is low, and norms about family care can lead to stigma. Religion plays a role in caregiving, but the interaction between dementia and Islam is less clear. RESEARCH DESIGN AND METHODS: Qualitative interviews were carried out with 20 people with dementia in Karachi and Lahore. Interviews were conducted in Urdu, translated to English, and respondents' views on help-seeking experiences, understanding of diagnosis, stigma, and religion were analyzed thematically. RESULTS: Although some people with dementia understood what dementia is, others did not. This finding shows a more positive perspective on diagnosis in Pakistan than previously thought. Help-seeking was facilitated by social and financial capital, and clinical practice. Stigma was more common within the family than in the community. Dementia symptoms had a serious impact on religious obligations such as daily prayers. Participants were unaware that dementia exempts them from certain religious obligations. DISCUSSION AND IMPLICATIONS: Understanding of dementia was incomplete despite all participants having a formal diagnosis. Pathways to help-seeking need to be more widely accessible. Clarification is needed about exemption from religious obligations due to cognitive impairment, and policy makers would benefit from engaging with community and religious leaders on this topic. The study is novel in identifying the interaction between dementia symptoms and Islamic obligatory daily prayers, and how this causes distress among people living with dementia and family caregivers.

A qualitative exploration of the views of patients and their relatives regarding interventions to minimize the distress related to postoperative delirium.

BACKGROUND: Postoperative delirium (POD) is common in older people and can be distressing for patients and their relatives. This study aimed to describe the experience of postoperative delirium and explore the views of patients and relatives in order to inform the codesign of an intervention to minimize distress related to postoperative delirium. METHODS: Qualitative study using a thematic analysis of semistructured interviews in patients (n = 11) and relatives (n = 12) who experienced and witnessed POD, respectively. RESULTS: Patients and relatives find POD distressing and desire information on the cause and consequences of delirium. This information should be delivered pre-emptively where possible for patients and relatives during the episode for relatives and in post episode follow up for patients and their families. Information should be provided in person by a health care professional who has experience in managing delirium, supplemented by written materials. In addition, participants suggested training to improve staff and public awareness of delirium. CONCLUSIONS: This qualitative study showed that patients and relatives find delirium distressing, report the need for an intervention to minimize this distress, and enabled codesign of a pilot intervention. Refinement and evaluation of this intervention should form the next step in this program of work.

Resurrecting the interval of need concept to improve dialogue between researchers, policymakers, and social care practitioners.

Academics, social care practitioners, and policymakers speak different languages. If academic research is to have an impact on society, it must be understandable and convincing to the end users. We argue that the conceptualisation of social care "need" is different among these stakeholders, leading to poor communication between them. Academics should use concepts that have more meaning to practitioners. We propose resurrecting a little-used concept from the 1970s, "interval of need", to help to bridge this gap. The interval of need concept identifies how often people require help, supplementing the usual data about types of tasks where assistance is needed. The history of the concept is described, followed by a test of its usefulness for today's researchers by applying it to data from the English Longitudinal Study of Ageing. An updated version of interval of need is proposed. Validation checks were conducted against mortality data, and through conceptual validation from a social work practitioner. The nature of the dataset limited comparability with previous studies. However, we conclude that the interval of need concept has promising scope to enhance communication of research findings, potentially leading to improved outcomes for service users. This paper strives to mark a turning point in the language and analysis of social care, ensuring that academic investigation in this field is convincing and clear to practitioners and policymakers.

Looking Back to Move Forward: The Value of Reflexive Journaling for Novice Researchers.

For novice qualitative researchers, each encounter in the field yields a ream of questions and uncertainties. While fieldwork has inherent ambiguities for all researchers, novice researchers have less experience on which to draw to assess their interactions with participants. Adding to this uncertainty, gerontological fieldwork is frequently imbued by age-and cohort-related nuances, characteristics which new researchers often do not share with participants. It is also not uncommon for new researchers to work primarily alone on projects, such as dissertations and theses. Mentors and academic advisors can help examine research encounters, however advice may be most constructive following engagement in reflexive exercises. We discuss the benefits of using reflexive journaling to assist with answering the many questions generated while conducting qualitative interviews during a study with family carers. Advisors should consider encouraging the use of reflexive journaling to help novices grow as researchers.

Factors influencing quality of life of elderly people with dementia and care implications: A systematic review.

BACKGROUND: Identifying factors associated with Quality of Life (QoL) of elderly people with dementia could contribute to finding pathways to improve QoL for elderly people in dementia. AIM: This paper systematically reviews all possible factors that influence QoL of elderly people with dementia, identifies how these factors are different by different stages of dementia and living settings, and explores how the influencing factors could be perceive differently by elderly people with dementia, family members, and caregivers. METHOD: PubMed, PsycINFO, Web of Science and DelphiS searches from 2000 to 2015 and hand searches of publication lists, reference lists and citations were used to identify primary studies on 'quality of life' and 'dementia' elderly people. RESULTS: The results suggest that there are a complex variety of factors influencing QoL of elderly people with dementia, and the factors cover demographic, physical, psychological, social, and religious aspects. And the factors influencing QoL of elderly people with dementia are different in different living settings (care institutions and communities) as well as different people's perspectives (elderly people with dementia, family members and care staff). Environmental factors and quality of care are important for elderly people in care institutions; while religious seem to only affect QoL of those living in communities. However, this review fails to comprehensively identify unique or common factors associated QoL in dementia across three stages. Further study should pay more attention to comparing factors associated with QoL in dementia across three stages of dementia.

Problems with measuring satisfaction with social care.

The measurement of customer satisfaction has become widespread in both healthcare and social care services, and is informative for performance monitoring and service development. Satisfaction with social care services is routinely measured with a single question on overall satisfaction with care, comprising part of the Adult Social Care Survey. The measurement of satisfaction has been problematised, and existing satisfaction measures are known to be under-theorised. In this article, the process of making an evaluation of satisfaction with social care services is first informed by a literature review of the theoretical background, and second examined through qualitative interviews conducted in 2012-2013 with 82 service users and family carers in Hampshire, Portsmouth and Southampton. Participants in this study were from white British and South Asian backgrounds, and the influence of ethnicity in the process of satisfaction evaluation is discussed. The findings show that the majority of participants selected a positive satisfaction rating even though both positive and negative experiences with services were described in their narratives. It is recommended that surveys provide opportunity for service users and family carers to elaborate on their satisfaction ratings. This addition will provide more scope for services to review their strengths and weaknesses.

Ethnicity as a determining factor for instrumental support in mid and later life in England and Wales.

OBJECTIVES: Minority ethnic groups are often assumed to exchange higher levels of informal support than the majority population, despite evidence that controlling for socioeconomic and health inequalities eliminates differences. Using a unique data set from England and Wales, we examined instrumental support across ethnic groups in mid and later life. METHOD: Employing data from the Home Office Citizenship Survey 2005 (N = 14,081), we investigated ethnic group differences in instrumental support among people aged 55 and older in England and Wales (n = 4,710). Multiple logistic regression was used to investigate the determinants of support given and received, guided by the Andersen-Newman behavioral model. RESULTS: Compared with the White British group, the Indian group reported significantly higher odds (odds ratio [OR] = 2.2, 95% confidence interval [CI] 1.0-4.7) of receiving instrumental support from household members but significantly lower odds of giving support to relatives outside the household (OR = 0.7, 95% CI 0.5-0.9). Three other ethnic groups (Pakistani and Bangladeshi, Mixed, Other) reported significantly lower odds in unadjusted findings, but when adjusted, ethnic group differences were no longer significant. DISCUSSION: Our analyses suggest few ethnic group differences in instrumental support once need and enabling factors were taken into account. Such findings are contrary to the belief that minority groups exchange more informal support and therefore have less need for formal services. The Andersen-Newman model is useful for guiding the analysis of support both given and received.

Individualism, collectivism and ethnic identity: cultural assumptions in accounting for caregiving behaviour in Britain.

Britain is experiencing the ageing of a large number of minority ethnic groups for the first time in its history, due to the post-war migration of people from the Caribbean and the Indian subcontinent. Stereotypes about a high level of provision of informal caregiving among minority ethnic groups are common in Britain, as in the US, despite quantitative studies refuting this assumption. This paper reports on a qualitative analysis of in-depth interviews with older people from five different ethnic groups about their conceptualisation of their ethnic identity, and their attributions of motivations of caregiving within their own ethnic group and in other groups. It is argued that ethnic identity becomes salient after migration and becoming a part of an ethnic minority group in the new country. Therefore, White British people who have never migrated do not have a great sense of ethnic identity. Further, a strong sense of ethnic identity is linked with identifying with the collective rather than the individual, which explains why the White British participants gave an individualist account of their motivations for informal care, whereas the minority ethnic participants gave a collectivist account of their motivations of care. Crucially, members of all ethnic groups were providing or receiving informal care, so it was the attribution and not the behaviour which differed.

Measuring unmet need for social care amongst older people.

Recent spending cuts in the area of adult social care raise policy concerns about the proportion of older people whose need for social care is not being met. Such concerns are emphasised in the context of population ageing and other demographic changes. For example, the increasing proportion of the population aged 75 and over places greater pressure on formal and informal systems of care and support provision, while changes in the living arrangements of older people may affect the supply of informal care within the household. This article explores the concept of 'unmet need' for support in relation to specific Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs), using data on the receipt of support (informal, formal state or formal paid) from the General Household Survey, the English Longitudinal Study of Ageing and the British Household Panel Survey. The results show that different kinds of need tend to be supported by particular sources of care, and that there is a significant level of 'unmet need' for certain activities.

The Stroud/ADI dementia quality framework: a cross-national population-level framework for assessing the quality of life impacts of services and policies for people with dementia and their family carers.

OBJECTIVES: To generate an internationally applicable framework for the systematic assessment of the quality of life impacts of services and policies for people with dementia and their family carers. DESIGN: A qualitative analysis of text. SETTING: Open groups at six consecutive Alzheimer's Disease International (ADI) Conferences (1999-2005) lasting between 1.5 and 2 h. Data were: presenters' texts, transcribed points made during discussion and written contributions. PARTICIPANTS: Three hundred and twelve contributors of text. RESULTS: From 2246 chunks of text, eight interacting domains relating to quality of life emerged: Public Attitudes and Understanding; Government and Social Policy; Funding for Services; Health; Communication; Choice and Personhood; Environment; and Quality of Care leading to the development of the Stroud/ADI Dementia Quality Framework. CONCLUSIONS: The Stroud/ADI Dementia Quality Framework helps to structure assessment of the quality of life impacts of population level approaches in dementia impacts of population-level approaches in dementia. Information available can be mapped onto the framework. With its international approach, the Stroud/ADI Dementia Quality Framework has validity across cultures within and between countries. It is intended as a useful aid for the assessment of services and policies for people with dementia and their family carers.

Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model.

BACKGROUND: The large majority of people with dementia receive nothing in the way of specialist assessment and care at any stage of their illness. There is a particular lack of services focussed on early identification and intervention in dementia where there is the possibility of long-term harm reduction for people with dementia and their family carers. We have developed a model of care that is complementary to local systems of health and social care (The Croydon Memory Service Model [CMSM]). This is a low-cost, high-throughput, generic service to enable early identification and intervention in dementia. It is a multi-agency approach with joint ownership by health services, social services and the voluntary sector with embedded specifically-tailored approaches to primary care and minority ethnic communities. METHOD: We completed a service evaluation of the introduction of the CMSM in a single borough in South London. Six predefined service goals were set: high acceptability; high appropriate referral rate; successful engagement with people from minority ethnic groups; successful engagement with people with young onset dementia; focus on engagement with mild cases to enable early intervention; and an increase in the overall number of new cases of dementia seen. Mixed qualitative and quantitative methodologies were used including a description and 6-month follow-up of a cohort of 290 consecutive referrals. RESULTS: All key predefined service goals were met: 95% acceptability; 94% appropriate referrals; successful engagement with minority ethnic groups (two-fold greater number compared with that expected from general population demographic data); 17% of referrals under 65 years of age; 68% referrals with mild or minimal dementia severity; and an estimated 63% increase in the number of new cases of dementia seen in Croydon. At 6-month follow up, those referred to the service had decreased behavioural disturbance and increased quality of life compared with baseline. CONCLUSIONS: Specific services for early dementia, which deliver diagnosis and care, can be established. These services can increase the numbers of people with early dementia identified and provided with care. Those receiving such services appear to improve in terms of quality of life and behavioural and psychological symptoms of dementia. Next steps should include the establishment of such services in other representative areas and evaluation of their effectiveness in comparison with other models of care.