It is never easy to care for a loved one with Alzheimer’s disease, especially if you are the primary or sole caregiver. My grandmother-in-law was recently diagnosed with Alzheimer’s disease. There was a delay in the diagnosis, mainly because we, as a family, simply didn’t know what we were supposed to be looking for. Come to find out, we were not alone. A 2006 study, “I CAN: Investigating Caregivers’ Attitudes and Needs” Conducted on behalf of The Alzheimer's Foundation of America (AFA) and sponsored by Forest Pharmaceuticals, Inc. found that 40% of caregivers delay in finding a diagnosis for this very reason.
This study also concluded that many caregivers, as many as 45%, reported that “seeing someone they love lose their ability to function effectively” was the most emotionally taxing part of caregiving. This study also indicated that 96% of caregivers wished that they received more help with the day-to-day tasks of providing care.
My mother-in-law is the primary caregiver to her mother. Our phone conversations used to be filled with excitement over upcoming holidays, family events and special gatherings. We now have frequent conversations in which my mother-in-law expresses deep gratitude for the home health aides that have helped her as she cares for her mother. Though my mother-in-law has been able to remain relatively up-beat as she provides full-time care, the exhaustion is noticeable in her voice.
The “I Can” study also revealed that overall, the two most visited places that caregivers go for information concerning Alzheimer’s disease is the doctor of a loved one and secondly, an advocacy organizations (such as Alzheimer’s Family Services). This study shows that, “at the time of diagnosis, many caregivers felt sad and/or scared thinking about what the future might bring. Other emotions were felt by some and tended to vary by caregiver gender. Level of preparedness at the time of diagnosis varied from respondent to respondent.” 65% of caregivers expressed sadness, knowing that this disease would only cause their loved one to worsen. 39% of caregivers expressed concern about what the future might bring. This study has shown that our family is not alone in the battle for our loved one’s health.
Kristina Robison, Executive Director of AFS, advises that education is the most significant influence at this point. She encourages caregivers to read, attend support groups, and go to seminars, watch documentaries, and research online. Of course, you can call Alzheimer's Family Services (AFS) for guidance as well. We have a small library of resources available for check out and a social worker that can help with specific challenges you may be facing.
Kristina states, “This does not negate the need for respite – or relief. Knowing something – and dealing with it on a daily basis are two different things. Take breaks. Recruit family and friends to visit with your loved one while you take a few hours off.” Providing care in your home can be overwhelming when you factor in the economic and emotional costs. Remember to take breaks! It will help reduce stress and anxiety—for you and your loved one. It may be well worth the expense to higher a sitter service or Home Health Care workers. §
This study can be read, in its entirety:
Lewis, Felisha & Irvine, Jenny (2006). I CAN: Investigating Caregivers’ Attitudes and Needs. Harris Interactive, Inc. Retrieved June 17, 2009, from http://74.125.95.132/search?q=cache:AcK3NF_8Qm8J:www2f.biglobe.ne.jp/~boke/ican2996.pdf+caregiver+attitudes+and+needs+survey+alzheimer%27s+foundation+of+america&cd=9&hl=en&ct=clnk&gl=us&client=firefox-a
•
del.icio.us
digg
facebook
E-mail this article to a friend (requires login).
