Featured Research

from universities, journals, and other organizations

Alzheimer's Care: Grief Is Heaviest Burden For Caregivers

Date:
March 10, 2008
Source:
University of Indianapolis
Summary:
The hardest part of caring for loved ones with Alzheimer's-type disorders is not the everyday practical challenge, but rather the emotional impact of losing the patients' support and companionship as the disease robs them of their faculties, according to new research.

The hardest part of caring for loved ones with Alzheimer’s-type disorders is not the everyday practical challenge, but rather the emotional impact of losing the patients’ support and companionship as the disease robs them of their faculties, according to new research at the University of Indianapolis.

“You are losing and grieving while you’re providing the care, because Charlie isn’t Charlie anymore,” says Associate Professor Jacquelyn Frank of UIndy’s Center for Aging & Community. She says the results point toward new avenues of service that could be provided by community-based support agencies.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients. She is continuing to analyze data from the survey’s 100-plus items, but she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.”

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically.

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence.

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Frank says.

The survey that is central to the study was administered at public events and through the assistance of the Greater Indiana Chapter of the Alzheimer’s Association. Most responses to the “biggest barrier” question fell into five categories, including:

  • the patient’s difficult behavior and need for hands-on care
  • shortfalls in community and financial support
  • difficulties in communicating with the patient, other relatives and medical professionals
  • the caregiver’s loss of personal time and freedom.

The overwhelming sentiment among the respondents, however, involved the personal grief and loss they were experiencing in the midst of their many practical concerns. To Frank’s surprise, many respondents sent personal notes and letters along with the questionnaire, noting that they appreciated the opportunity to bring their feelings into the open.

Frank hopes the study results can be used to help design new support and intervention programs for dementia caregivers. Even friends and family don’t always understand that dementia poses unique challenges, she says, and that adds to the sense of isolation and hopelessness many caregivers already feel.

“These people need to know that feelings of grief and loss are normal, and that other caregivers face the same emotional difficulties,” Frank says.


Story Source:

The above story is based on materials provided by University of Indianapolis. Note: Materials may be edited for content and length.


Cite This Page:

University of Indianapolis. "Alzheimer's Care: Grief Is Heaviest Burden For Caregivers." ScienceDaily. ScienceDaily, 10 March 2008. <www.sciencedaily.com/releases/2008/03/080306220016.htm>.
University of Indianapolis. (2008, March 10). Alzheimer's Care: Grief Is Heaviest Burden For Caregivers. ScienceDaily. Retrieved April 20, 2014 from www.sciencedaily.com/releases/2008/03/080306220016.htm
University of Indianapolis. "Alzheimer's Care: Grief Is Heaviest Burden For Caregivers." ScienceDaily. www.sciencedaily.com/releases/2008/03/080306220016.htm (accessed April 20, 2014).

Share This



More Mind & Brain News

Sunday, April 20, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Study On Artists' Brain Shows They're 'Structurally Unique'

Study On Artists' Brain Shows They're 'Structurally Unique'

Newsy (Apr. 17, 2014) The brains of artists aren't really left-brain or right-brain, but rather have extra neural matter in visual and motor control areas. Video provided by Newsy
Powered by NewsLook.com
Is Apathy A Sign Of A Shrinking Brain?

Is Apathy A Sign Of A Shrinking Brain?

Newsy (Apr. 17, 2014) A recent study links apathetic feelings to a smaller brain. Researchers say the results indicate a need for apathy screening for at-risk seniors. Video provided by Newsy
Powered by NewsLook.com
Are School Dress Codes Too Strict?

Are School Dress Codes Too Strict?

AP (Apr. 16, 2014) Pushing the limits on style and self-expression is a rite of passage for teens and even younger kids. How far should schools go with their dress codes? The courts have sided with schools in an era when school safety is paramount. (April 16) Video provided by AP
Powered by NewsLook.com
Could Even Casual Marijuana Use Alter Your Brain?

Could Even Casual Marijuana Use Alter Your Brain?

Newsy (Apr. 16, 2014) A new study conducted by researchers at Northwestern and Harvard suggests even casual marijuana use can alter your brain. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins