PL3. The Value of Diagnosis
Detailed Programme, abstracts and presentations
PL3.1. Are we getting better at diagnosing Alzheimer’s disease and other dementias?
Whether we have improved the diagnosis of Alzheimer’s disease is an easy question, yet difficult to answer. The diagnosis of dementia, especially Alzheimer’s disease has improved in the last years, but we are still very far from perfection. There are several reasons for this.
First, we updated our diagnostic research criteria by adding CSF A-beta 42 and tau levels which may predict which patients with amnestic Mild cognitive impairment (MCI) will progress to AD. However, such an approach is not very accessible to GPs due to laboratory requirements. Even if we introduce a set of strict demands, such as the presence of appropriate clinical syndrome [late life-onset amnesia, disorders of executive function (e.g. organisation, working memory), a psychiatric syndrome or a combination of these] and the accumulation of abnormal proteinaceous structures resulting in neuronal and synaptic loss (which might be seen in neuroimaging), these remain very theoretical and not applicable to general clinical practice.
A second problem arises due to the lack of exact criteria of MCI and, recently subjective cognitive impairment (SCI). These states are very heterogeneous. It is possible to misdiagnose persons with depression, anxiety or psychosis or to treat physiological, benign memory impairment.
The next two problems are associated with doctors. Unfortunately, the idea of characteristic symptoms in old age which are not tied up to illness is still very prevalent. The statement “it is only a problem of old age” continues to be used too often. As a consequence, doctors are not using screening procedures, e.g. MMSE, CDT or CT-scan.
Although there is wide knowledge about different psychopathological symptoms, even in the pre-clinical phase of illness, doctors are still not taking into account the presence of dementia when prescribing drugs (and doses) which can be threatening to patients with dementia (e.g.antipsychotics or benzodiazepines).
The last problem concerns the specific relationship of the doctor and caregiver. Doctors are acting as highly specialised professionals for whom there is no place at the time of diagnosis for detailed information about the course of dementia, additional burden due to psychological symptoms, psychoeducation and usual, human support. This lack of cooperation can induce a decrease in compliance, an increase of caregiver burden, physical and psychological complaints and can lead to burn out syndrome. As a consequence, institutionalisation often occurs too early.
PL3.2. The value of diagnosis – findings of the Alzheimer Europe survey
Background : In February 2011, a public opinion survey was carried out to assess public attitudes about Alzheimer’s disease in France, Germany, Poland, Spain and the US.
The survey focused on the following topics:
- Public awareness of the problem of Alzheimer’s disease and the priority respondents place on dealing with the disease,
- Respondents’ experience with Alzheimer’s disease,
- Beliefs about the effectiveness of current diagnosis and treatment of Alzheimer’s disease,
- Beliefs about the value of a diagnosis for the patient and family.
Methods: Alzheimer Europe collaborated with Alzheimer associations in France, Germany, Poland, Spain and the US and a working group of experts in the development of the survey questions. The Harvard School of Public Health was responsible for the survey design, analysis and reporting. The data collection was conducted by TNS, an independent research company between 7 and 27 February 2011.
The survey was 12 minutes long and included:
- 600 completed interviews conducted by landline and cell phone with adults, 18 years and older, in the United States. Respondents were given the option of doing the survey in Spanish
- 500 completed interview with adults, 18 years and older, in each of the following European countries: France, Germany, Poland and Spain.
Results: The survey provided a number of unexpected results:
- In most countries, Alzheimer’s disease has become the disease, after cancer, that people are most afraid of getting.
- Considerable differences existed between countries with regard to people being worried that they or someone in their family will get Alzheimer’s disease,
- Close to three quarters of respondents had first-hand experience of knowing someone with Alzheimer’s disease,
- There was high knowledge about the symptoms associated with Alzheimer’s disease, with respondents associating short term memory loss, confusion, disorientation and difficulties with daily tasks with Alzheimer’s disease. Long-term memory problems and behavioural problems were less often associated with Alzheimer’s disease.
- Willingness to see a doctor was very high across countries, whether for a family member or for the respondents themselves.
Conclusions: Awareness and familiarity with Alzheimer’s disease was high in all participating countries and respondents showed an exceptional willingness to learn of a diagnosis of Alzheimer’s disease.
PL3.3. The impact and value of a diagnosis for people with dementia
Archie Latta, Helga Rohra, Marc Romecki
The Alzheimer Europe survey on public perceptions found great public interest in early diagnosis and willingness to confront the disease.
Several other studies confirmed that people with dementia prefer to be informed of the diagnosis of dementia. Non-disclosure or vagueness is reported by people with dementia as being confusing or upsetting.
Keightley and Mitchell (2004) describe some of the pros and cons of disclosure as follows:
“Although by being truthful you may confirm someone’s worst fears, you also give them the opportunity to come to terms with the situation and work through their feelings. Without a diagnostic framework within which to understand their experience many people with dementia will be left frightened that they are going mad with little or no support.”
In this session, we will discuss the impact and value of a diagnosis with people with dementia. Archie Latta (United Kingdom), Helga Rohra (Germany) and Marc Romecki (Poland) will be sharing their experiences of receiving a diagnosis.
Last Updated: mercredi 26 octobre 2011