According to a new survey, the biggest fear for the majority of family caregivers is their loved one’s general health and physical decline followed by the fear that Alzheimer’s will rob their loved one of the ability to communicate. The survey designed by the National Family Caregivers Association (NFCA) and Forest Laboratories, Inc. and conducted by the GfK Roper Public Affairs & Corporate Communications, shows that the progressive inability to properly communicate is more than just a fear, it is a major source of stress, which interferes with the caregivers obligation and ability to function responsibly.

Alzheimer’s is a progressive, neurodegenerative disorder whereby patients have memory problems that affects their thinking and behavior, which eventually becomes severe enough to impact work, lifelong hobbies, and their social life. In the U.S. every 69 seconds someone develops Alzheimer’s disease and as the baby boomer population continues to age, by 2050, estimates are that someone will develop the disease every 33 seconds. Alzheimer’s is the fifth leading cause of death for people aged 65 years and older and the sixth leading cause of death across all ages in the U.S., Healthcare costs for Alzheimer’s are projected to increase from $183 billion in 2011 to $1.1 trillion by 2050.

According to estimates 5.4 million Americans suffer from Alzheimer’s disease, who are being cared for by almost 15 million unpaid caregivers, including family, friends, partners and neighbors. Caring for someone with Alzheimer’s is often the equivalent to a full-time job. 80% of family caregivers provide at-home care for Alzheimer sufferers or for those with another dementia.

Suzanne Mintz, president and chief executive officer of NFCA says:

“Caregiving is incredibly stressful, and also very lonely and isolating, particularly with Alzheimer’s disease when the loved one gradually loses the ability to communicate effectively. Caregivers have to improvise and find new ways to connect with their loved ones – whether it’s on an emotional level or about more practical matters.”

Over half of caregivers say they are “not very” or “not at all” able to communicate effectively with their loved ones, with conversations about medications, emotions, medical decisions, insomnia/sleep disturbances and personal hygiene proving to be the most difficult. Because of this, the majority of caregivers report gradually giving up on attempting to have two-way communications, but despite the stress linked to communicating most caregivers (71%) report that they adopt new ways to communicate and 76% feel they have become better communicators themselves.

84% of caregivers report that one alternative method is to observe facial expressions whilst 79% report watching their loved one’s body language and 66% use pictures or photos.

Mintz comments:

“Men and women responded similarly to the questions in the survey, with small differences. One difference was that nearly all females – 92 percent – caring for male patients relies on observing facial expressions to communicate. In contrast, 82 percent of males who care for female patients rely on observing facial expressions to communicate.”

Gustavo Alva MD, DFAPA, Medical Director of ATP Clinical Research in Costa Mesa, CA says:

“Family caregivers are the people who typically see this disease progress before their eyes. It becomes one of their many responsibilities to keep track of what’s going on with the patient on a daily basis and share the information with the doctor, which is why it’s important for the family caregiver and physician to have a regular dialogue and a good relationship. Caregivers should regularly communicate what symptoms the patient is experiencing, because there are FDA-approved treatments available for all stages of the disease, which can make a real difference for patients and family caregivers.”

The NFCA has devised a new suggestion leaflet designed specifically for Alzheimer’s family caregivers. The leaflet provides advice on how caregivers can communicate with their loved ones and others involved in the patient’s care. The leaflet is available here. Mintz comments:

“The experiences of today’s family caregivers and the tools they are using to adapt are very important for all Americans to learn about. With Alzheimer’s disease on the rise, many people could be a caregiver starting tomorrow.”

Caring for an Alzheimer’s patient seems to encourage caregivers to become proactive about their own risk for the disease with about 9 in 10 caregivers reporting that they will immediately seek medical advice if they notice symptoms of Alzheimer’s disease in themselves.

The survey revealed that African-American caregivers reported spending more time caring for their loved one with Alzheimer’s disease than Caucasian caregivers, and although alternative communication methods are widely adopted by all groups, 80% of Hispanic and 81% of African-American caregivers tend to use such methods compared with 69% of Caucasians.

The survey also revealed that most caregivers have help, only 12% of caregivers care solely for a loved one without help. The average age of caregivers is reported as 50 years or older, however, a significant minority (7%) of caregivers are 30 years or younger, in most cases the younger caregivers are looking after their grandparents (average age 77) as part of the “Millennial” generation. About three fourths of caregivers also worry about developing the disease themselves.

The study was conducted between March 28 and April 25, 2011 by GfK Roper Public Affairs & Corporate Communications on behalf of the National Family Caregivers Association (NFCA) and Forest Laboratories, Inc. and included 674 Alzheimer’s disease (AD) caregivers, including oversamples to reach 100 African-American and 100 Hispanic AD caregivers in the overall sample. Investigators categorized results by age, race and education to reflect the population of Alzheimer’s disease caregivers.

Written by Petra Rattue