Demographic and contextual factors related to knowledge about Alzheimer's disease

Accurate knowledge about Alzheimer's disease (AD) is essential to address the public health impact of dementia. This study examined AD knowledge in 794 people who completed the Alzheimer's Disease Knowledge Scale and questions about their background and experience with AD. Whereas overall knowledge was fair, there was significant variability across groups. Knowledge was highest among professionals working in the dementia field, lower for dementia caregivers and older adults, and lowest for senior center staff and undergraduate students. Across groups, respondents knew the most about assessment, treatment, and management of AD and knew the least about risk factors and prevention. Greater knowledge was associated with working in the dementia field, having family members with AD, attending a related class or support group, and exposure to dementia-related information from multiple sources. Understanding where gaps in dementia knowledge exist can guide education initiatives to increase disease awareness and improve supportive services.     

Dementia and the Deaf community: knowledge and service access

Objectives: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural–linguistic status.Methods: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18–60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18–60. Data were subjected to a thematic content analysis.Results: Participants’ concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia.Conclusions: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.     

Mental health service utilization by Ethiopian immigrants and refugees in Toronto

The purpose of this study was to examine the mental health service utilization patterns of Ethiopians in Toronto. A cross-sectional epidemiological survey of 342 randomly selected adults was conducted, based on a conceptual model of healthcare utilization suggested by Anderson and Newman. The results suggested that 5% of the respondents sought mental health services from healthcare professionals and 8% consulted nonhealthcare professionals. Although Ethiopians' utilization rate of mental health services did not greatly differ from the rates of the general population of Ontario (6%), only a small proportion (12.5%) of Ethiopians with mental disorders used services from healthcare professionals, mostly family physicians. The data also suggested that Ethiopians were more likely to consult traditional healers than healthcare professionals for mental health problems (18.8% vs. 12.5%). In multivariate logistic regression analyses, while the number of somatic symptoms experienced was positively associated with increased mental healthcare utilization (OR = 1.515, p < 0.05), having a mental disorder was associated with decreased mental healthcare utilization (OR = 0.784, p < 0.01). Our findings have important implications for mental health services. On the one hand, the findings suggest that somatic symptoms could lead to increased use of mental health services, particularly family physicians' services. On the other hand, the data suggested that although the mental healthcare needs of Ethiopians are high, they use fewer mental health services from healthcare professionals. It would seem that family physicians could play important role in identifying and treating Ethiopian clients with somatic symptoms, as these symptoms may reflect mental disorder.     

Epilepsy: patient perceptions of their condition.

The objective of this study was to ascertain the perceptions of people with epilepsy about their condition. Nine hundred and eight questionnaires were sent to members of epilepsy associations, with a 45% response rate, and 625 questionnaires were sent to neurologists for their patients to complete, with a response rate of 16.5%. The results reinforce and extend previous observations that there is an ongoing need for educating health care professionals and persons with epilepsy about the condition. Matters pertaining to driving, the unpredictability of seizures, lack of employment and cognitive difficulties were of major concern to the respondents. The present data also highlighted the vexed relationship between stress and seizure control, which needs to be further investigated. These data should be of value to doctors and other health care professionals in their dealings with people with epilepsy. It should also provide epilepsy associations with data upon which they might be able to plan education services.     

Mental health experiences and needs among primary care providers treating OEF/OIF veterans: preliminary findings from the Geisinger Veterans Initiative

This study describes the results of the Reaching Rural Veterans Initiative (RRVI) funded by the Commonwealth of Pennsylvania and the Federal Government. The purpose of this project was to address the needs of veterans and their family members in rural communities who were seen by non-VA primary care providers. As part of this project, an assessment of healthcare providers' knowledge and awareness of mental health-related issues and experiences with veterans' healthcare services was conducted. Following this assessment, an education program was developed and implemented at primary care sites within the Geisinger Health System and also made available to other area providers. The survey indicated that Geisinger's primary care providers are currently involved with providing mental health care to area service members and their families. It was estimated that these providers saw about 1,200 Operation Enduring Freedom/Operation Iraqi Freedom (OEF/OIF) patients and 3,600 of their family members in clinics over a 6 month period. A significant number of these persons had mental health problems. About two-thirds (65.4%) of providers reported having a mental health professional onsite and nearly 23% reported that over one-third of their patients have mental health problems. Significant mental health gaps discovered indicated that providers lacked knowledge of PTSD and other combat-related stress disorders, as well as knowledge of VA resources. In addition only 20% of the providers rated their mental health treatment skills as high and only about 8% reported that they had adequate knowledge of current mental health treatment strategies. Based on this needs assessment and the results of the provider intervention, further service improvements are planned.     

When a little knowledge is a dangerous thing...: a study of carers' knowledge about dementia,preferred coping style and psychological distress

OBJECTIVES: The aim of this study was to improve understanding of the relationship between carers' existing knowledge about dementia, their coping style and psychological morbidity. METHOD: Fifty carers and patients attending day services were recruited. Carers were given questionnaires to assess knowledge of dementia, preferred coping style, anxiety, depression and strain. RESULTS: The results indicated that carers who demonstrated more knowledge about the biomedical aspects of dementia were more anxious (p < 0.05). Furthermore, carers who had a preferred coping style of monitoring for threat relevant information were more anxious (p < 0.005). CONCLUSIONS: Understanding more about those factors that are associated with knowledge about dementia will help to identify profiles of carers who are in need of education and in matching individually tailored interventions to carers with specific learning needs.     

Causes of crises and appropriate interventions: The views of people with dementia,carers and healthcare professionals

The aims of this study were to identify which factors may lead to crisis for people with dementia and their carers and identify interventions these individuals believe could help in crisis. Qualitative study using focus groups to compare the perspectives of people with dementia, family carers and healthcare professionals on causes of crises and crisis interventions. To help in a crisis, people with dementia were favourable towards support from family and friends, access to mobile phones and home adaptations to reduce risks. Carers were keen on assistive technology and home adaptation. Both carers and staff valued carer training and education, care plans and well-coordinated care. Staff were the only group emphasizing more intensive interventions such as emergency home respite and extended hours services. In terms of causes of crises, people with dementia focused on risks and hazards in their home, whereas family carers emphasized carer stress and their own mental health problems. Staff, in contrast were concerned about problems with service organization and coordination leading to crises. Physical problems were less commonly identified as causes of crises but when they did occur they had a major impact. Practical interventions such as home adaptations, assistive technology, education and training for family carers, and flexible home care services were highly valued by service users and their families during times of crisis and may help prevent hospital admissions. Specialist home care was highly valued by all groups.     

The prevalence and causes of dementia in people under the age of 65 years

OBJECTIVES: To determine the prevalence of dementia in people under the age of 65 in a large catchment area, and use these figures to estimate the number of younger people affected by dementia in the UK. DESIGN: Epidemiological catchment area prevalence survey. SETTING: The London boroughs of Kensington and Chelsea, Westminster, and Hillingdon with a total population of 567500 people. PARTICIPANTS: All residents of the catchment area with dementia, where the illness began before the age of 65 years. Participants were notified to the study by medical and care professionals. The diagnosis and age of onset was established from all available health and social care records. In total, 227 people were identified, of whom 185 fulfilled the inclusion criteria of having a dementia which started before their 65th birthday. MAIN OUTCOME MEASURES: Diagnosis of dementia and differential diagnosis of the cause of the dementia. RESULTS: The prevalence of dementia in those aged 30-64 was 54.0 per 100000 (95% CI 45.1 to 64.1 per 100000). For those aged 45-64 years, the prevalence was 98.1 per 100000 (95% CI 81.1 to 118.0 per 100000). From the age of 35 onwards, the prevalence of dementia approximately doubled with each 5 year increase in age. Extrapolating these figures nationally suggests that there are 18319 (15296-21758) people with dementia under the age of 65 in the UK. CONCLUSIONS: The study confirms previous "guestimates" of the number of younger people affected by dementia in UK. The prevalence figures generated are robust, and are supported by other smaller and targeted prevalence surveys. The prevalence figures provided by this study will allow health planners to accurately estimate need and plan services.     

Younger people in dementia care: a review of service needs,service provision and models of good practice

This paper reviews the literature on younger people (under 65 years of age) with dementia, in dementia care. Seventy-four relevant papers were identified by use of a search strategy derived from the methodology of systematic reviews, the majority of which originated in the UK (69, 93.2%). The need for specialist, flexible, age-appropriate, and dedicated services was a central theme in the literature. A person-centred approach was advocated within an individual or 'tailor made' model of care. However, the available evidence suggests that this model of good practice is not currently reflected in the majority of services provided in the United Kingdom. Overall, the literature argues that the needs of younger people with dementia are best served by inter-agency collaboration, early assessment, and an awareness of individual needs. Clearly, these proposals could usefully serve anybody with dementia, irrespective of age. However, aside from a few prevalence studies, and some exploratory work with small numbers of service users, little in the way of empirical work is available. The recommendations that have been made regarding dementia services for younger people are based largely on the practical experience of professionals and paid carers, rather than scientific evidence.     

Dementia: Questions of cost and value

The importance of economic considerations in determining the quantity and quality of services for people with dementia is beyond dispute. As the pressure on the resources available for health and social care increases, the need to mount a strong case for adequate resources for dementia-related services has become more pressing. The article reviews available evidence under three headings: the impact of dementia on national economies; its impact on individuals and their carers; and the costs and benefits of different models of service provision. It is concluded that there is evidence for the inadequacy of resources currently available; those resources could in many instances be better targeted; but there remain substantial gaps in our knowledge of the costs and benefits of different services and the likely long-term impact of increases in the numbers of people with dementia.     

THE EXPERIENCE OF DYING WITH DEMENTIA: A RETROSPECTIVE STUDY

Objective. To describe the last year of life of people with dementia, their symptoms, care needs, use of and satisfaction with health services and the bereavement state of the respondent. Methods. The study is drawn from the Regional Study of Care for the Dying, a retrospective sample survey of the carers, family members or others who knew about the last year of life of a random sample of people age 15 and over dying in the last quarter of 1990. The samples were drawn in 20 English health districts which, although self-selected, were nationally representative. There was a total of 3696 patients (response rate of 69%) dying from all causes. Within this sample, 170 dementia patients were identified and compared with 1513 cancer patients. Results. The symptoms most commonly reported in the last year were mental confusion (83%), urinary incontinence (72%), pain (64%), low mood (61%), constipation (59%) and loss of appetite (57%). Dementia patients saw their GP less often than cancer patients and their respondents rated GP assistance less highly. Dementia patients needed more help at home compared with cancer patients, and received more social services; 78% of respondents for dementia patients and 64% for cancer said they had come to terms with the patient's death. Conclusion. Patients dying from dementia have symptoms and health care needs comparable with cancer patients. Greater attention should be given to these needs. © 1997 by John Wiley & Sons, Ltd.     

Why Doesn't a Family Member of a Person With Advanced Dementia Use a Substituted Judgment When Making a Decision for That Person?

OBJECTIVE: The objective of this study was to identify what standard of decision making a family member uses when making medical decisions for their relative with advanced dementia. METHODS: Thirty family members of patients with advanced dementia from an Alzheimer disease center and a suburban long-term care facility were interviewed using a semistructured interview. All interviews were audiotaped, transcribed, and analyzed using qualitative data analysis techniques. RESULTS: Family members were split almost evenly in the standard they used when making medical decisions for their relative: substituted judgment (43%) or best interests (57%). However, few who used the substituted judgment standard viewed it as distinct from best interests. Instead, both standards were taken into consideration when making medical decisions. In addition to not having discussions about healthcare preferences, the reasons for not using a substituted judgment included: the need for family consensus, unrealistic expectations of the patient, the need to incorporate their relative's quality of life into the decision, and the influence of healthcare professionals. Family members who did not have discussions about healthcare preferences identified various barriers to the discussion, including waiting too long, avoiding the topic, and the patient's denial of dementia. CONCLUSION: These data suggest several reasons why surrogate decision-makers for persons with advanced dementia do not use the substituted judgment standard and the potential value of interventions that would allow patients with early-stage dementia and their family members to discuss healthcare preferences.     

Knowledge of mental health benefits and preferences for type of mental health providers among the general public

OBJECTIVE: The study explored knowledge of mental health benefits and preferences for providers among the general public. METHODS: Analysis was based on a telephone survey of 1,358 adults randomly sampled throughout Michigan in 1997-1998. RESULTS: A large proportion of the respondents were uninformed about their mental health benefits. One-quarter of the sample were unsure if their health plan even included mental health services. Forty-three percent of the sample believed that mental health benefits were equal to benefits provided for general medical services. In answer to a survey question that summarized payment restrictions for psychiatric services and counseling under Medicare, nearly a quarter of older respondents indicated that they would not seek care even when needed. In the overall sample, the majority of respondents said they would initially seek care from their primary care physician for a mental health problem, although responses varied by age. Persons over age 65 were significantly more likely to seek assistance from their primary care doctor than were younger persons. CONCLUSIONS: The general public lacks information about important mental health benefits, and this lack of information may represent a barrier in their seeking care when needed. Given the overriding preference for primary care providers to treat mental health problems, particularly among older adults, mental health issues should be given more attention at all levels of primary care education.     

Utilization of legal and financial services of partners in dementia care study

Financial and legal services are unique needs of persons with dementia and their caregivers. This study examines their need for legal and financial assistance and the kinds of legal and financial services provided within Partners in Dementia Care, a telephone-based, care coordination and support service intervention delivered through a partnership between Veterans Affairs (VA) medical centers and local Alzheimer's Association chapters. Based on comprehensive assessment, and needs prioritization, care coordinators collaboratively planned action steps (specific behavioral tasks) with each caregiver/person with dementia to address the dyad's identified unmet needs. Results show that 51 (54.8%) of 93 dyads reported a need for legal and financial services. Action steps related to legal and financial need included education or assistance with legal services (27.27%), nonhealth-related financial benefits (32.32%), health-related financial benefits (21.21%), financial management/planning (9.09%), and financial support (10.1%). Comparable numbers of action steps were directed to VA (41.4%) and non-VA (58.6%) services.     

The educational needs of families of mentally ill adults: the South Carolina experience

OBJECTIVE: Family members of patients at South Carolina State Hospital in Columbia were surveyed to learn their needs for education, skill building, and support. METHODS: A random sample of 80 families participated in a telephone survey in 1995 to obtain information for development of a family program. Families were asked about their information and support needs in 13 areas, their preferences about the location and scheduling of family services, and barriers that might prevent them from participating. RESULTS: Respondents identified needs in several areas. The most frequent need, identified by more than 75 percent of families, was for advocacy in communicating with professionals and others. Twenty-nine percent of respondents reported that more contact with the social worker or physician would help improve their relationship with their ill relative. Families expressed the most interest in individualized sessions of family services (66 percent). Thirty-five percent of families were interested in informal support groups, such as the National Alliance for the Mentally Ill, and 29 percent in formal support groups, such as those developed by mental health professionals. No special preference was noted when families were asked about site of educational and support services-at the hospital (48 percent), in the community (46 percent), or at home (48 percent). Transportation and distance were the chief barriers cited by family members (68 percent) to participating in family services. CONCLUSIONS: Results indicated that mental health professionals should continue efforts to engage families in a partnership for the benefit of the patient and the family and to help contain service costs.     

PROFILING THE CARE NEEDS OF THE POPULATION WITH DEMENTIA: A SURVEY IN CENTRAL SCOTLAND

Objective. To demonstrate a low-cost method of producing local information for dementia service planning. Design. (1) Multiservice census. (2) Stratified random sample survey (stratified by setting) to assess needs. Setting. All community and institutional settings in Forth Valley Health Board area. Participants. (1) People age 65+ defined by health and social care professionals as having ‘problems of memory/confusion (as is caused by dementia)’ (N=2060). (2) As (1) excluding those with score <2 on Levin's checklist and no relevant known diagnosis (N=286). Main outcome measures. Coverage of population with dementia against EURODEM prevalence. Place of residence of sufferers. Level of care needs. Main results. Identified population, pro-rating for identifiable non-response, accounted for 78% of EURODEM prevalence. Assuming unidentified 22% to live at home, 45% of total population with dementia were in some form of institutional care. Survey demonstrated high levels of need in local population with dementia known to services. Assistance was required more than once a day with mobility by 48%, personal care by 60%, domestic tasks by 75% and because of behavioural problems by 57%. Assistance was required at night by 59% because of personal care needs and by 54% because of behaviour problems. Conclusion. The value of a broad-based survey ‘snapshot’ across the range of settings was confirmed. It can be accomplished relatively quickly and cheaply and complements information collected in other ways. © 1997 John Wiley & Sons, Ltd.     

Quality palliative care for cancer and dementia in five European countries: some common challenges

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries.

Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings.

Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints.

Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care.     

Barriers to community support for the dementia carer: a qualitative study

OBJECTIVES: To understand how carers of dementia sufferers gain access to community support and to determine potential barriers for carers. DESIGN: Qualitative study using semi-structured interviews of carers after an Aged Care Assessment Team intervention. SETTING: Australian metropolitan Aged Care Assessment Team. SUBJECTS: 24 live-in carers of dementia sufferers. MAIN OUTCOME MEASURES: Carers' subjective experience of sources of stress in their care of the dementia sufferer focusing on interactions with the general practitioner and formal community support agencies. RESULTS: Most carers suffered high levels of stress, mainly due to behaviour disturbances and care needs of the dementia sufferers. Problems with health care agencies were also reported by a majority of the carers to be contributors to their distress. General practitioners were perceived to have referred dementia sufferers late for community care, despite the carer having experienced difficulties for a considerable time period. Carers also complained that too little information was provided about the diagnosis of dementia, how to deal with problem behaviours and how to access support services before and after the assessment procedure. CONCLUSIONS: Problems with the interaction between the carer and the general practitioner appear to be important in delaying access to appropriate support and information. Earlier recognition of carers' problems, the provision of better education and earlier access to support services may lessen the degree of stress experienced by carers.