The Investigating Caregivers’ Attitudes and Needs (I CAN) survey examined the perceptions of caregivers of people with Alzheimer’s disease. The survey is based on interviews with a nationwide cross section of 539 caregivers – currently caring for a loved one with Alzheimer’s disease – conducted online within the United States by Harris Interactive ® for the Alzheimer’s Foundation of America (AFA).
To access the full report and complete methodology, click here
Survey Highlights: Investigating Caregivers’ Attitudes and Needs
Stigma and Denial Delay Diagnosis
- More than half of caregivers (57%) surveyed mention that fear of stigma and/or denial contributed to a delayed diagnosis
- Concern about stigma and denial of symptoms are associated with a delayed diagnosis of Alzheimer’s disease, occurring, on average, more than 2 years (28.7 months) after symptoms appear
- When people with Alzheimer’s disease are concerned about stigma, a diagnosis of Alzheimer’s disease occurred, on average, 3.5 years (40.1 months) after symptoms appear
- When caregivers are concerned about stigma, delay of diagnosis is even more severe, averaging 6 years (71.4 months)
- Remarkably, many caregivers who mentioned fear of stigma and/or denial as a reason for delay in diagnosis appear to have largely overcome their fear and are more likely than those who did not struggle with stigma and denial to say they are extremely/very knowledgeable about Alzheimer’s disease (72% vs. 59%)
Families Feel Abandoned, Struggle with Caring for Loved Ones on Their Own
- Caregivers of parents are significantly more likely than caregivers of spouses to say they now have less time for themselves (74% vs. 56%) and have felt abandoned by family (34% vs. 14%)
- Caregivers of spouses confide in significantly fewer sources of support than caregivers of parents (2.7 vs. 3.3), and are significantly less likely to say they would like more help (52% vs. 77%)
- More than half of caregivers (60%) report that they are the only one of their siblings responsible for their parent’s care
- Some respondents report that relationships with siblings deteriorated after a parent was diagnosed (86% of siblings were somewhat or very close prior to diagnosis vs. 75% post-diagnosis)
More Education, Support Needed
- Sixty-nine percent of caregivers surveyed report that they want more help from family and friends
- Caregivers indicate that more help in certain areas could ease the caregiving strain, most notably assistance with day-to-day caregiving activities (20%), more financial support (16%), more emotional support (15%) and more time for themselves (13%)
- Caregivers overall are most likely to confide in friends (58%), physicians/healthcare professionals (41%), children (38%), spouses (35%), and siblings (33%)
- Lack of knowledge about Alzheimer’s disease is a barrier to diagnosis for more than one in three caregivers surveyed (40%), suggesting that more education is needed.
- While the majority (92%) of caregivers report that they are aware of medications that may slow the progression of symptoms, only half (51%) of caregivers surveyed are aware of the opportunity for combination therapy
Caregivers Emerge Stronger, More Compassionate
- Roughly two-thirds (64%) of caregivers report they have become a more compassionate person since caring for a loved one with Alzheimer’s disease
- Additionally, 76 percent of caregivers state they have learned that they are stronger than they thought since caring for someone with Alzheimer’s disease
- An estimated one in ten persons over age 65 and nearly half of those 85 or older have Alzheimer’s disease. With age the greatest risk factor, aging baby boomers are at risk.1
- The average Alzheimer's patient will survive 8 to 10 years from the time of diagnosis, though the disease can last for as long as 20 years 2
- The incidence of Alzheimer’s disease is expected to triple by 2050 1
- Almost 75 percent of home care is provided by family and friends 3
The Investigating Caregivers’ Attitudes and Needs (I CAN) survey was conducted on behalf of the Alzheimer’s Foundation of America (AFA) by Harris Interactive ® and sponsored by Forest Pharmaceuticals, Inc.
1 Alzheimer’s Foundation of America. http://www.alzfdn.org/alzheimers/statistics.shtml.
2 Alzheimer’s Foundation of America. http://www.alzfdn.org/alzheimers/life.shtml
3 Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other Dementias. U.S. Congress Office of Technology Assessment; U.S. Government Printing Office, 1987; p. 14.