Vienna, July 12, 2009 – A doctor's positive attitude to Alzheimer's diagnosis and their trusting, personal relationships with local dementia support service providers are powerful enablers for early diagnosis of Alzheimer's, according to new research reported today at the Alzheimer's Association 2009 International Conference on Alzheimer's Disease (ICAD 2009) in Vienna.
Current data suggests that less than 35 percent of people with Alzheimer's disease or other dementias have a diagnosis of the condition in their medical record (Boise et al., 2004; Boustani et al., 2005; Ganguli et al., 2004; Valcour et al. 2000). While there is currently no cure for Alzheimer's, early detection and diagnosis is critical to ensuring that people living with Alzheimer's have the power to plan their own healthcare and future, according to the Alzheimer's Association.
"By getting diagnosed late in the progression of the disease, opportunities are missed to make key decisions about treatment, care and, future planning. Being diagnosed early is vital to receiving the best help and care possible, living one's life to the fullest, and capitalizing on opportunities such as participating in clinical studies," said William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer's Association.
Dr. Nerida Paterson, Senior Lecturer in the Discipline of General Practice at the University of Newcastle, Australia, and colleagues are interviewing more than 100 general practitioners (GPs) from four Australian research sites, taping and transcribing the interviews, and analyzing the content for themes and insights that can improve the diagnostic process.
"Increasing evidence suggests that early diagnosis of Alzheimer's and timely intervention is beneficial, both for people with the disease and their caregivers," Paterson said. "Because doctors are the primary entry way to healthcare services for the elderly and the usual point of contact with the health system for individuals with dementia and their caregivers, there remains a need to overcome their attitudes of 'therapeutic nihilism' surrounding dementia."
According to Paterson, "therapeutic nihilism" is a belief that there is no recognized cure or effective treatment for an illness, and therefore treatment or intervention in any form is not important.
At ICAD 2009, Paterson reported an interim analysis including interviews with 25 GPs.
The most cited enabler to early Alzheimer's diagnosis is a doctor's positive attitude to the diagnosis and treatment of dementia. In addition, GPs reported that having a trusting, personal relationship with individuals who provide dementia support services is a powerful enabler for dementia diagnosis and management. Most of the GPs reported that referral to support services for legal and financial planning, patient education, and caregiver support is an important part of disease management.
Additional factors that encourage early Alzheimer's diagnosis include: support from relatives and caregivers, belief in the patient's right to know, and the desire of GPs to be honest and open with their patients.
According to the researchers, the most frequently cited barriers to diagnosis of dementia in this study are that patients and GPs have differing health priorities, GPs are largely dependent on being alerted by either the patient or a relative about symptoms of memory loss, and GPs' challenges with properly timing referral to support services. Also reported by GPs was fear of damaging the doctor-patient relationship, especially around the issue of declaring the patient's inability to drive safely.
"Older patients frequently have complex and overlapping illnesses involving multiple body systems. Often these diseases are having a bigger impact on their day to day lives than mild cognitive impairment. As a result, when they see the doctor, their priority is to have their non-cognitive health needs addressed," Paterson said.
According to the study, this is especially true if the person is also a caregiver. GPs reported that caregivers tend to downplay their own needs and behave as though they cannot afford to become ill and give up their caregiving role. They reported that caregivers spend most of their appointments discussing the person for whom they are a caring, and not their own health needs.
If a patient appeared to be functioning well, GPs in this study were less likely to suspect cognitive impairment. GPs reported that a cognitive deficit is more often brought to their attention by a relative or caregiver than by the patient; an informant is seen as vital for early diagnosis.
GPs also identified that they find it difficult to remember to re-offer referral to Alzheimer's support services to patients and caregivers. GPs generally suggest these services soon after the diagnosis is made. However, patients and caregivers are still adjusting to the diagnosis at this time and may be suffering from denial, anger and guilt and often reject the referral. When they are ready to accept support, the GP is often unaware that their attitude has changed.
The researchers recommend that doctors should be educated to have a higher level of suspicion for symptoms of cognitive decline, especially in caregivers and people with complex, multi-system diseases, and that GPs should offer referrals to support services for people with dementia and caregivers on multiple occasions during the diagnostic and treatment process.
A literature review on early diagnosis of dementia and diagnostic disclosure in primary care conducted by the same researchers and also presented at ICAD 2009, reinforced these themes and suggested that the involvement of practice and community nurses in the diagnostic process may overcome some of the barriers and improve detection rates.
About ICAD 2009
The 2009 Alzheimer's Association International Conference on Alzheimer's Disease (ICAD 2009) brings together more than 3,000 researchers from 70 countries to share groundbreaking research and information on the cause, diagnosis, treatment and prevention of Alzheimer's disease and related disorders. As a part of the Association's research program, ICAD 2009 serves as a catalyst for generating new knowledge about dementia and fostering a vital, collegial research community. ICAD 2009 will be held in Vienna, Austria at Messe Wien Exhibition and Congress Center from July 11.
About the Alzheimer's Association
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit www.alz.org.
- Nerida E. Paterson, et al - Early diagnosis of dementia in primary care in Australia: A qualitative study into the barriers and enablers (Funder: National Health and Medical Research Council, Australia.)
- Nerida E. Paterson, et al - The barriers to the early diagnosis of dementia and diagnostic disclosure in primary care (Funder: Dementia Collaborative Research Centres, Australia.)
EMBARGOED FOR RELEASE UNTIL SUNDAY, JULY 12, 2009
12:30 p.m. (Vienna) / 6:30 a.m. ET (U.S.)
All materials to be presented at the 2009 Alzheimer's Association International Conference on Alzheimer's Disease (ICAD 2009) are embargoed for publication and broadcast until the date and time of presentation at the International Conference on Alzheimer's Disease, unless the Alzheimer's Association provides written notice of change of embargo date/time in advance.
EMBARGOED FOR RELEASE
UNTIL SUNDAY, JULY 12, 2009,
12:30 p.m. (Vienna) / 6:30 a.m. ET (U.S.)
Control #: 09-A-1096-ALZ P1 - Sunday Posters, Presentation #P1-046; Speaking Time: 7/12/2009 12:30 - 3:00 PM
Early diagnosis of dementia in primary care in Australia: A qualitative study into the barriers and enablers
Nerida E. Paterson, Dimity Pond; University of Newcastle, Callaghan. NSW, Australia.
Disclosure Block: N.E. Paterson, None; D. Pond, None.
Contact e-mail: Nerida.Paterson@newcastle.edu.au
Background: GPs are the gatekeepers to service provision for the elderly and the usual point of contact with the health system for individuals with dementia and their carers. Increasing evidence suggests that early diagnosis and timely intervention is beneficial, both for patients and their carers. Despite this, there remains a need to overcome GPs' therapeutic nihilism surrounding dementia. GPs report that the most difficult problem with the management of dementia is the communication and disclosure of the dementia diagnosis.
Research indicates the barriers to the early diagnosis of dementia and diagnostic disclosure of that diagnosis in primary care include:
- Negative attitudes to dementia care/therapeutic nihilism
- Stigma
- Paucity of dementia services, especially in rural areas
- GPs' lack of confidence or training
- Lack of a recognised and the time-efficient screening tool
Methods: Although there is much literature on barriers to diagnosis, little research has been done on enablers. To identify the barriers and enablers experienced by Australian GPs, a qualitative study, using individual, semi-structured interviews, is being conducted. Participants are GPs across four Australian research sites who have consented to participate in a larger trial on dementia. Interviews are audio taped and transcribed. Data is then coded and subjected to thematic analysis.
Results: A number of themes have emerged. Enablers to diagnosis include: 1) Support from relatives/carers. 2) Access to services 3) the belief in the patient's right to know 4) the desire of GPs to be honest and open with their patients 5) Availability of a quick and effective screening tool. Barriers to diagnosis include the lack of the aforementioned enablers and also the fear of damaging the doctor-patient relationship, especially around the issue of driving cessation and license cancellation. Further data is being collected and preliminary findings will be presented.
Conclusions: Compelling evidence suggests that there are several structural and ideological obstacles that GPs encounter when attempting to diagnose dementia. However, there is also evidence of factors which encourage diagnosis and disclosure. Future educational supports for GPs need to concentrate on both of these areas.
All materials to be presented at the 2009 Alzheimer's Association International Conference on Alzheimer's Disease (ICAD 2009) are embargoed for publication and broadcast until the date and time of presentation at the International Conference on Alzheimer's Disease, unless the Alzheimer's Association provides written notice of change of embargo date/time in advance.
EMBARGOED FOR RELEASE UNTIL SUNDAY, JULY 12, 2009, 12:30 p.m. (Vienna) / 6:30 a.m. ET (U.S.)
Control #: 09-A-1092-ALZ
P1 - Sunday Posters, Presentation #: P1-047; Speaking Time: 7/12/2009 12:30 - 3:00 PM
The barriers to the early diagnosis of dementia and diagnostic disclosure in primary care
Nerida E. Paterson, Dimity Pond; University of Newcastle, Callaghan. NSW, Australia.
Disclosure Block: N.E. Paterson, None; D. Pond, None.
Contact e-mail: Nerida.Paterson@newcastle.edu.au
Background: GPs are the gatekeepers to service provision for the elderly and the usual first point of contact with the health system for individuals with dementia and their carers. Increasing evidence suggests that early diagnosis and timely intervention is beneficial, both for patients and carers. Despite this, there remains a need to overcome GPs' therapeutic nihilism surrounding dementia. GPs report that the most difficult problem with the management of dementia is the communication and disclosure of the dementia diagnosis.
Methods: An extensive literature review was performed to determine the barriers and enablers for diagnosis of dementia by GPs. The Medline and Google Scholar databases were searched for peer reviewed articles published in English from January 1996 to 2009. No limitations were placed on sample size or response rate. Qualitative and quantitative studies were included. A structured search methodology was used to locate the relevant body of publications and the search strategy allowed for the fact that a number of terms are used inter-changeably in the literature. Additional references were identified through hand searches of selected journals and bibliographies of relevant articles.
Results: Forty-nine papers met the inclusion criteria. Research indicates the barriers to the early diagnosis of dementia and diagnostic disclosure in primary care include:
- Negative attitude to dementia care/therapeutic nihilism
- Stigma
- Difficulties in differentiating normal ageing from dementia
- The paucity of specialist diagnostic services, especially in rural areas
- GPs lack of confidence or training
- Lack of a recognized, time-efficient screening tool
- A perceived lack of need to determine a specific diagnosis
- Limited time
- Risk of misdiagnosis
- The patient's impaired ability to provide an accurate history and participate in self-care
- Perception that the patient cannot comprehend/cope with the diagnosis
- Risk of damaging the doctor-patient relationship
There is emerging evidence that the involvement of practice and community nurses in the diagnostic process may overcome some of the barriers and improve detection rates.
Conclusions: Compelling evidence suggests that there are several structural and ideological obstacles that GPs encounter when attempting to diagnose dementia. However, there is also evidence of factors which encourage diagnosis and disclosure. Future educational supports for GPs need to concentrate on both these areas.