Alzheimer's Disease - Alzheimers IMPACT Study
Last Updated on Thursday, 18 March 2010 09:55
About the IMPACT study
The IMPACT study (Important Perspectives on Alzheimer's Care and Treatment) is a large pan-European online survey of the attitudes of caregivers, physicians, the general public and payors towards Alzheimer's disease and dementia. It was initiated and financed by Pfizer Inc. and Eisai Europe Ltd.
Rationale
Attitudes to, and awareness of, Alzheimer's disease can vary across countries, and between stakeholder groups.1 Despite its prevalence and impact, around half of dementia cases remain undiagnosed.2 Diagnosis is often difficult, particularly in the early stages,3 however if the disease is diagnosed early enough there are many things that may be done to help people prepare for the future by managing the disease early on.4 Early identification of dementia benefits the patient but also has benefits for the family, caregivers, healthcare systems, and society in general.5
Aims and objectives
The IMPACT study set out to update current knowledge on attitudes and behaviours towards Alzheimer's disease in Europe, in particular with a focus on the barriers to optimal dementia care. The overall objective is to help improve knowledge and increase understanding of this devastating disease by determining a common "reason to care" about dementia.
Study methodology6
IMPACT is a large online survey conducted in Alzheimer's disease and dementia, involving 1,800 people from five countries – France, Germany, Italy, Spain and the UK.
Responses were analysed from:
- 1,000 members of the general public (men and women aged 18 years and above)
- 500 physicians who treat patients with Alzheimer's disease (general practitioners and neurologists)
- 250 caregivers (spouses, children, children-in-law or grandchildren who are either currently serving or had served as the unpaid primary carer of someone diagnosed with Alzheimer's disease within the past two years)
- 50 payors
There were equal numbers of each group from each of the five countries - 200 from the general population, 100 physicians, 50 caregivers, and 10 payors from each country. For the purposes of the survey results, 51 subjects from the general public (six Alzheimer's disease sufferers and 45 primary caregivers) were excluded, and responses from a sub-population of 949 general public respondents who did not have Alzheimer's disease and who were not primary caregivers of a person with Alzheimer's disease were reported.
A 30-minute internet-based questionnaire was issued between April-May 2009 to participants to assess their opinion and perception on issues relating to aging and dementia. For caregivers, there were additional questions on the impact of caring on their life.
Key roles
The questionnaire was designed by Ipsos Marketing, in conjunction with Pfizer Inc. and Eisai Europe Ltd. The content and structure of the survey was reviewed and endorsed by a group of dementia experts, the IMPACT Steering Committee, which included Professor Roy Jones MD, Director, The Research Institute for the Care of Older People (RICE) Centre, Royal United Hospital and Professor Sandrine Andrieu, Professor of Epidemiology and Public Health, Toulouse University School of Medicine.
Results6
Respondents generally agreed that the symptoms of early Alzheimer's disease are difficult to recognise, and many people are unable to distinguish these signs and symptoms from normal ageing. A majority of physicians and caregivers (59% and 56% respectively) agreed that many general practitioners are unaware of the early symptoms of Alzheimer's disease. Furthermore, 46% of carers also thought that specialists had difficulty in diagnosing Alzheimer's disease in the early stages.
The average time from a caregiver noticing symptoms to contact with a physician was 43 weeks (ranging from 33 weeks in Germany to 56 weeks in Italy). Reasons that caregivers gave for the delay include waiting until symptoms were no longer temporary (38%), belief that symptoms were a normal part of ageing (36%), patient resistance to consult a doctor (33%), or they did not realise how serious the symptoms were (32%).
A majority of caregivers (60%) and the general public (68%)6 did not know, or did not believe that there were effective treatments for Alzheimer's disease. However, more than half of the general public, caregiver and physician responders agreed that early treatment could delay the progression of the disease. 75% of physicians believed that early treatment could delay progression of the disease but less than half (47%) recognised that effective treatments are available.
Most respondents recognised the devastating effects of Alzheimer's disease on caregivers and families, and a majority of caregivers, the general public, and physicians do not believe that their governments invest nearly enough in Alzheimer's disease.
Carers reported consequences for their lifestyle, including increased fatigue, loss of time for themselves or their families and a negative impact on hobbies, holidays and time off, social life, working hours, finance or health. Most carers expressed negative feelings about their role (difficult, 59%; exhausting, 55%; demanding, 46%; stressful, 45%; frustrating, 40%; and depressing, 36%).
The importance of screening for Alzheimer's disease in people aged 65 and over varied among the responder groups. Only 56% of physicians and 40% of payors believed it was extremely/very important, whereas the majority of caregivers (84%) and the general population (80%) held this view.
Conclusion
The IMPACT study has identified barriers to care for people with Alzheimer's disease. The study highlighted the difficulty of diagnosing dementia, especially in the initial stages of the disease. 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.
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[1] Kurz A, Schulz M, Reed P, Wortmann M, Rodrigo R, von Lützau Holbein H, Grossberg G. Personal perspectives of persons with Alzheimer's disease and their carers: A global survey. Alzheimer's & Dementia 2008;4:345–352.
[2] Boise L, Camicioli R, Morgan DL, Rose JH, Congleton L. Diagnosing dementia: perspectives of primary care physicians. Gerontologist. 1999 Aug;39(4):457-64.
[3] Alzheimer's Society. Diagnosis. Available at URL: http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200292. Last accessed February 2010.
[4] Doraiswamy PM, Steffens DC, Pitchumoni S, Tabrizi S. Early Recognition of Alzheimer's disease: What is consensual? What is controversial? What is practical? J Clin Psychiatry. 1998;59(suppl. 13):6-18.
[5] Iliffe S, Manthorpe J and Eden A. Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study. Family Practice 2003;20:376–381.
[6] IMPACT Study 2009: Global Alzheimer's Awareness Study. Caregivers, payors, physicians and members of the general public surveys. Data on file Eisai Europe Ltd, Pfizer Limited.
