Assessing attitudes and behaviours surrounding Alzheimer's disease in Europe: Key findings of the important perspectives on Alzheimer's care and treatment (IMPACT) survey

Abstract

The Important Perspectives on Alzheimer's Care and Treatment (IMPACT) survey is an assessment in Europe of the attitudes of caregivers, physicians, the general public and payors towards Alzheimer's disease and dementia. This was an Internet-based questionnaire study, which sought to determine the opinion and perception of responders on issues relating to ageing and dementia. There were additional questions for caregivers on the impact of caregiving on their life. Responses were analysed from 949 members of the general public, 500 physicians (generalists and specialists), 250 caregivers and 50 payors from 5 countries--France, Germany, Italy, Spain and the United Kingdom. The survey highlighted the difficulty of diagnosing dementia, especially in the initial stages of the disease. The average time from first noticing symptoms to diagnosis varied from 36 to 63 weeks. Caregivers and the general public felt they had insufficient information about the benefits of treatment and care, although more than half the general public, caregiver and physician responders agreed that early treatment could delay the progression of the disease. The majority of respondents recognised the devastating effects of AD on caregivers and families, and a majority of caregivers, the general public and physicians agreed that their governments fail to view AD as a health care priority. This study occurs roughly 5 years after a similar survey, and provides a timely update. Despite some important differences between the methodologies used in these surveys, diagnosis of dementia is still a key issue, especially amongst generalists, as is the provision of information and support to caregivers. Despite the prevalence of AD in the ageing population of Europe, the perception within each of the 5 countries surveyed is that AD is not viewed as a health care priority.

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

“…Two studies used a combination of representative and convenience sampling (Cody et al, 2002, Kaduszkiewicz et al, 2008a, one study used a 'market research' sample but how this was sourced was not clear (Jones et al, 2010). Participation rates ranged from 15% to 100%.…”

“…Beneficial to receive a timely diagnosis GPs 43% (Milne et al, 2005) GPs 45% (Milne et al, 2000) GPs 52% (Renshaw et al, 2001) GP 85% (Fox et al, 2014) Telling person with dementia usually more helpful than harmful Hospital general practitioners 54% (Pathak and Montgomery, 2015a) GPs 65% (Turner et al, 2004) GP 70% (Fox et al, 2014) Telling diagnosis and prognosis does more harm than good (rated from 1 to 6) GPs mean 2.4± 1.3 Specialists mean 2.3 ±1.2 (Kaduszkiewicz et al, 2008a, Kaduszkiewicz et al, 2008b Limited benefits to diagnosis AD/Dementia is untreatable GP 5% (Fox et al, 2014) No point diagnosing dementia because support not available GP 29% (Fox et al, 2014) Early detection of dementia has no therapeutic consequences (rated from 1 to 6) GPs mean 1.9 ± 1.3 Specialists mean 1.7 ± 1.2 (Kaduszkiewicz et al, 2008a, Kaduszkiewicz et al, 2008b PWD can be a drain on resources with little positive outcome Hospital general practitioners 39% (Pathak and Montgomery, 2015a) Confident making PCP 34% (Rubin et al, 1987) Confidence in diagnosis and management diagnosis GP 52% (Downs et al, 2000) Hospital general practitioners 67% (Pathak and Montgomery, 2015a) GPs 73% (Vassilas and Donaldson, 1998) Difficulty with early detection GPs 39% (Olafsdottir et al, 2001) Difficulty with early detection Diagnostic capacity (rated 1-10) PCPs 59% specialists 30% (Jones et al, 2010, Martinez-Lage et al, 2010) GPs mean 6.2 ± 2.0 (Gaboreau et al, 2014) Not confident telling patient GP 41% (Downs et al, 2000) 70 Communicating a diagnosis of dementia Not confident telling family GP 21% (Downs et al, 2000) Confident in providing advice in managing dementia Hospital general practitioners46% (Pathak and Montgomery, 2015a) Managing dementia is more often frustrating than Hospital general practitioners 55% …”

Screening for cognitive impairment, Alzheimer's disease and other dementias: Opinions of European caregivers, payors, physicians and the general public

“…Generalists (n=250) included general practitioners, hospital general physicians, family physicians and internists; specialists (n=250) included neurologists, geriatricians, neuropsychiatrists, psychiatrists and psychogeriatricians. For a complete description of each respondent group and the survey methodology see the article in this issue by Jones, et al (19).…”

Dementia and the Deaf community: knowledge and service access

“…For example, black, minority, Asian and ethnic communities (BAME) in the UK face greater barriers to earlier diagnosis because of poor access to information tailored to specific language needs and/or cultural perspectives (APPG, 2013). At a European level, the quality of diagnostic and care services for younger and older people with dementia are unevenly distributed on a geographical basis (Jones, Mackell, Berthet, & Knox, 2010) and pathways to care lack integration and systematic evaluation (Mukadam, Cooper, & Livingston, 2011). Examining how social, cultural and service-related factors mediate recognition of dementia and service access is important in initiating effective change for individuals and/or communities who are behind the curve of earlier diagnosis and timely care and support.…”