It is estimated that 42,000 people in west virginia have ad in 2005 (wv alzheimer’s association) and that by 2025 there will b
Testing the West Virginia Alzheimer’s Disease Registry
• The West Virginia Alzheimer’s Disease Registry was tested by a small number of
physician specialists to see if data could be collected easily in an office setting and if the data we collected were useful.
• Data collection in a physician’s office setting took less than ten minutes per patient and
was reported to be relatively simple and straightforward.
• The data we collected were consistent with many national trends including age, gender,
education, testing, diagnosis, and treatment of Alzheimer’s patients but also provided some unique insights into Alzheimer’s Disease in West Virginia.
• West Virginia patients are younger than those in other parts of the country, they tend to
live at home where they are looked after by their spouse or another family member and they suffer from a number of other medical conditions including high blood pressure, high cholesterol levels, and diabetes.
• The Registry will be able to tell physicians and other health care providers, their
patients, local, regional and state decision makers, and the public about the medical, economic and social impact of Alzheimer’s Disease in West Virginia.
• The Registry is an important new tool in understanding Alzheimer’s disease and related
dementias in West Virginia. It may prove vital in winning the battle against this disease.
• The Registry is ready for a phased roll out among West Virginia physicians that should
be preceded by a targeted physician education/outreach campaign.
Collecting Patient Data The West Virginia Alzheimer’s Disease Registry (Registry) is a secure, encrypted, password- protected database that uses a web-based or paper data collection form. There are twenty- four questions that collect demographic, diagnostic, treatment and other medical condition information from patients who have been diagnosed with Alzheimer’s disease or a related dementia. Because only a physician can diagnose and treat Alzheimer’s Disease, the registry will only accept patient information from a physician. We make sure the physician has a valid medical license and issue him/her a unique username and password. Once the physician is authorized, he or she may authorize any staff member in the office to enter data into the Registry. If the office doesn’t want to use the internet, we have paper forms that can be filled out and then faxed or mailed back to us. We collect the patient’s name, gender, last four digits of their SSN, place and date of birth, education level, and current address, whether the patient is living with someone or is alone, and the patient’s race and ethnicity. There is also a question about whether or not the patient has or had blood relatives with dementia. We collect diagnostic information including the age of the patient at the onset of dementia and at the time of diagnosis, the type of dementia, the stage of dementia at diagnosis and currently, and a listing of dementia-related exams. The patient treatment information we collect includes whether the patient is on dementia medication and what dementia medications he/she is taking. There is a question about whether the patient or his/her caregiver is interested in receiving further disease-related information. Questions about other medical conditions include obesity, diabetes, hypertension, high cholesterol, cardiovascular or cerebrovascular disease, neurological disease or psychiatric illness. Finally, we find out if the patient has been exposure to head trauma, contaminants/toxins or has used tobacco, alcohol, or drugs of abuse. The data we collect is strictly protected and conforms to federal regulations concerning electronic data and patient privacy. Physicians can view complete records of their own patients at any time. Patient private health information can only be viewed by the physician entering the data and the Director of the Registry. Only group statistics are every released by the Registry and they never have any identifying information. Testing the Registry Data about the physicians
During two months of testing, six physician specialists (two psychiatrists and four geriatric specialists) familiar with the Registry enrolled a total of seventy patients. Sixty-three records were sent by internet and the other seven were sent by fax to the Registry and then entered into the database. Internet-based data collection was quick taking less than ten minutes per patient for a physician or office administrator who was familiar with the database and had all the required information at hand. Patient data
The patients enrolled in the database during testing were chosen by the participating physicians so the data reported here are not a random sample and do not necessarily represent the larger population of patients in West Virginia with Alzheimer’s Disease. Nevertheless, the information we obtained from just seventy patients is similar to the national picture in many ways. Demographic data The first set of graphs shows the gender, age, and education of registered patients and where and with whom they live. Sixty-one percent of patients were women and 75% of the patients were over 75 years old. An important finding was that 8.5% of the patients were younger than 65 so they may have early onset Alzheimer’s Disease. This is higher than the national average which means that West Virginia may have more young people with Alzheimer’s Disease. This is supported by other national statistics showing 90% of people with Alzheimer’s disease are over aged 75 compared to only 75% of our patients who were over 75 years old. These data mean that considerable public and private resources may need to be used in West Virginia to accommodate, care for and treat younger patients who could suffer from the disease for as long as 8 to 12 years before they die of complications like pneumonia. These data could also mean that there may be a large number of older people in West Virginia with Alzheimer’s Disease who do not see a doctor or have not been diagnosed, and may not be getting the treatment they need. Another way of looking at the data is that West Virginia patients with Alzheimer’s Disease die at a younger age because of other medical conditions like heart disease, diabetes or stroke because these conditions are higher in West Virginia than the national average. No matter how one interprets these preliminary statistics, they point out the clear need for a more accurate assessment of the current state of Alzheimer’s Disease and related dementias in West Virginia.
West Virginia Alzheimer's Disease Pilot Testing (n=70)
Looking at where patients lived and who they lived with showed that 44% lived in a private home with a caregiver and 14% were living alone. This means we may need to pay more attention in West Virginia to providing medical care and other services for house-bound patients. When we looked at the data more closely, we found that a husband or wife or another member of the family was looking after these patients. The Alzheimer’s Association estimates that over 105,000 people in West Virginia provide unpaid care to a person with dementia at an annual value of 1.4 billion dollars. Across the country, over 60% of these caregivers say that have very high levels of emotional stress and 43% say they have very high levels of physical stress. With so much care falling on the shoulders of the family, we may need to pay more attention to their health and welfare because they often also become victims of the disease. Finally, our pilot test found that 16% of patients only went to grade school and 57% went no further than high school. This is troubling because there is a definite relationship between educational level and development of dementia. Diagnostic data
The second set of graphs shows over 65% of the patients were diagnosed with Alzheimer’s Disease. Fewer patients had vascular dementia (20%), senile dementia (17%) and mixed dementia (11%). There were also some cases of multi-infarct dementia, frontotemporal dementia and Parkinson’s disease. A surprising statistic was how many people had a relative with dementia. This does not mean that these patients have the inherited form of dementia but it does mean the number of family members who are demented is more common in West Virginia than the national average would indicate. Treatment
The second set of graphs also tells us that nearly all the patients (80%) are taking medicine for their dementia and nearly all of them are taking an acetylcholinesterase inhibitor (e.g., Aricept) at an early or middle stage and an NMDA receptor antagonist (e.g., Namenda) at a middle to late stage of the disease. In many cases the acetylcholinesterase inhibitor (e.g., Aricept) is being combined with an NMDA receptor antagonist (e.g., Namenda) at the middle to late stage of the disease. Other medical conditions
Nearly all patients registered during testing had one or more physical and/or mental health conditions and the most common were high blood pressure (67%), high cholesterol (27%), heart disease (26%), and diabetes (14%). Diseases like these can actually predict whether a person will become demented. Our patients also had other mental disorders and the most common was depression. Exposure Because many of the patients were only seen late in life, the hardest questions to answer were whether patients had been exposed to contaminants or toxic substances. The only reliable information we could get was that 23% had smoked. Conclusion
When we look at all the statistics from our pilot test of the Registry we see many results that follow what is happening in the rest of the US. We can also say that West Virginia has some unique challenges including a young group of patients who have a lot of other health concerns. The Registry certainly seems to be worthwhile and will be an important new tool in understanding Alzheimer’s disease and related dementias in West Virginia. Now we need to tell West Virginia doctors about it and help them use it.
Developing World Bioethics ISSN 1471-8731 (print); 1471-8847 (online) Volume 5 Number 1 2005 MODULE THREE:VULNERABLE/SPECIAL PARTICIPANT POPULATIONS This module is designed to sensitise you to the special needs of partici-pants who belong to populations that are more vulnerable than other participant populations. These populations typically include incom-petent persons women who may or may not