People With Alzheimer's Disease Speak Out In First Ever Global Survey

Main Category: Alzheimer's / Dementia
Article Date: 21 Sep 2007 - 13:00 PDT

email to a friend   printer friendly   view / write opinions   rate article

Today, Alzheimer's Disease International (ADI) announced the results of a global survey investigating the unmet needs, challenges and communication gaps faced by patients with mild-to-moderate Alzheimer's disease (AD) and caregivers in six countries on three continents: the United States, Canada, France, Germany, Spain and Brazil.

This is a landmark survey as it is the first time a survey has included responses of people with Alzheimer's disease as well as caregivers. The results coincide with World Alzheimer's Day 2007, a day of global solidarity between individuals and organisations fighting against the threat of Alzheimer's disease and other forms of dementia.

"Our theme for the 2007 World Alzheimer's Day Campaign is 'People with Dementia Speak Out!'. 24 million people around the world and millions more families have to live with the daily challenges and persistent stigma of dementia. It is time for them to have their voice heard on a global stage. This survey is an important step in this journey," said Orien Reid, Chairman of ADI.

"I think it is long overdue that we hear from Alzheimer's patients", said Alexander Kurz, MD, Professor of Psychiatry and Head of the Centre for Cognitive Disorders at the Department of Psychiatry and Psychotherapy of Technische Universität München, Munich, Germany. "This landmark survey gives us good insight into how the patient and caregiver see and respond to this disease from their perspective."

Survey Results:

1. Quality of Life

The results showed that most of the Alzheimer's patients surveyed still have the ability to enjoy life, have a warm relationship with their carer and feel safe and supported at home. This is testament to the hard work and devotion of caregivers, nearly all of whom surveyed said providing the best quality of life to the person in their care was important to them.

Well over 80% of the AD patients felt that they continued to "keep a social life with their family and friends" and still feel "well-respected by family members."

While the majority of caregivers said "caring for someone with AD is burdensome," over 70% reported that caring for an AD patient also helps them "appreciate what's really important" in life. Three-fourths of the caregivers replied that being a caregiver is "one way I can repay some of the love and care I received in the past" and more than half said it is "rewarding."

2. Access to Information & Support Services

In all participating countries, the primary source of AD information is the patient's physician for both patients and caregivers. Overall, caregivers look to family and friends as a secondary source of information; for patients, magazines and newspaper articles rank second. After the physician, caregivers in the United States and Canada search the Internet as a secondary source for AD information.

Alzheimer associations are the tertiary source of information. According to the survey, Alzheimer association support services are utilized about a third more by caregivers and patients in the participating European countries as compared to those from North America. Generally Alzheimer associations are looked to for listings of local peer support groups and physicians, information on new treatments and information on social events for those living with Alzheimer's disease.

In general, patients and caregivers from participating European countries reported a much higher rate of utilization of support services (to include professional home care, away-from-home day programs, and organized peer support groups) than those from the U.S.

Mr Marc Wortmann, the Executive Director of Alzheimer's Disease International, which helped conduct the survey, said, "people with Alzheimer's disease and their caregivers do not fully take advantage of the all the support services available to them through their local Alzheimer association. The work of these organizations is often underestimated, but this survey shows they have an important role. We hope that we can continue to raise awareness not only of Alzheimer's, but also of the many resources available to those living with it."

3. Views on Alzheimer's Disease Treatment

For those patients on Alzheimer's medication, more than 70% are either "satisfied" or "somewhat satisfied" with the treatment and feel that the medicine is helping control symptoms. Caregivers, more so than patients, expressed their desire that AD medications "come in a form that was easier to take" and with a "dosing regimen that was easier to comply with." This may be a reflection of the fact that in many cases it is the caregiver who manages the medication and caregivers put more importance on "knowing that the medications are being taken properly" than patients.

About the Study

The study was commissioned by ADI and conducted by Harris Interactive between June 14th and August 20th, 2007 among patients and caregivers of patients with early-stage Alzheimer's disease in the US, Canada, France, Germany, Spain and Brazil.

100 to 102 patients were interviewed in each of France, Germany, Spain, Brazil and the US (There was insufficient patient participation in Canada to be included in the study). 100 to 114 caregivers were interviewed in each of the same countries and in Canada. Patients and caregivers were invited to complete the 10 minute survey over the phone. Study participants were recruited through Harris' network of physicians, through nursing homes, Harris General and/or Chronic Illness Panels, referrals from AD organizations via advertisements, and vendor-supplied lists of AD sufferers and household members.

This survey was supported by an unrestricted grant from Novartis

http://www.alz.co.uk/