Caregiver Revolution

Caregivers’ Views Related to Stage of Loved One’s Illness and Whether Caregiver Had a Choice in Assuming Responsibility   (from www.caregiving.org)

WASHINGTON, DC, March 31, 2011— One-half of caregivers of individuals with Alzheimer’s disease or dementia surveyed for a new caregiver study find an equal balance of positive and negative experiences in their caregiving.  One-third (33 percent) say their caregiving experience is more positive than negative.

The 2011 report, “Caregivers of Individuals with Alzheimer’s or Dementia,” which was presented at a briefing on Capitol Hill today, examines both positive and negative feelings associated with caregiving for individuals with progressive deterioration of their abilities and faculties.  Conducted by the National Alliance for Caregiving and sponsored by Pfizer Inc., the study found that:

• Two out of three caregivers feel that caring for their loved one gives them the opportunity to “give back” (65 percent)
• Nearly one-half of caregivers feel they now have a closer personal relationship with the person to whom they provide care (46 percent)
• More than four in 10 feel they now live more “in the moment” than they did before (44 percent)

When asked how they have been changed by their caregiving experience, 67 percent are more grateful, 60 percent are more accepting, 56 percent are more patient and 51 percent are more assertive.

Emotional stress appeared as one of the prevalent negative feelings associated with caregiving.  In fact, 61 percent of caregivers reported feeling highly stressed.  Forty (40) percent indicated feelings of guilt that they were not doing more to help their loved one and 39 percent reported anger with themselves for becoming frustrated with their loved one.

When looking at the initial signs of the disease, the study found that nine of 10 caregivers observed events and situations that led them to believe their loved one probably had Alzheimer’s or dementia.  Only three in 10 say a doctor’s examination or questioning was one of the events that initially contributed to their thought that Alzheimer’s or dementia was present (31 percent).

“I think that it’s revealing that 70 percent of family caregivers recognized the symptoms of Alzheimer’s on their own, without a doctor’s questioning,” says Gail Hunt, CEO and president of the National Alliance for Caregiving.  “This shows me that the public is beginning to understand the signs and symptoms of Alzheimer’s. Primary care physicians may need more education to help in screening older patients.”

The study looked at the care recipients’ condition, diagnosis of the illness, actions taken and information sources used, the impact of the caregiving situation, profiles of caregivers and background on the caregiving situation.  Results found that caregivers’ views of their situations were related to two factors:  the stage of their loved one’s illness and the choice they felt they had in assuming their caregiver role.

“Patients with dementia rely on caregivers every day,” says Warachal Faison, Pfizer’s Director of Primary Care Medical Affairs.  “It’s imperative that we support these caregivers, so they can balance their work and the needs of their loved ones.  As the number of dementia patients grows, we need to be attentive to family caregivers who are making significant sacrifices for the good of others.”

The “Caregivers of Individuals with Alzheimer’s or Dementia 2011” report is based on a quantitative survey of 1,000 family caregivers, age 18 or older, who provide unpaid care to an individual with Alzheimer’s, dementia or age-related mental confusion or forgetfulness.  Respondents were screened to ensure their care recipient was at least 40 years old.  The on-line questionnaire was fielded from September 14 to September 27, 2010.

About the National Alliance for Caregiving

Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. The Alliance was created to conduct research, do policy analysis, develop national programs, and increase public awareness of family caregiving issues. Recognizing that family caregivers make important societal and financial contributions toward maintaining the well-being of those for whom they care, the Alliance’s mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients. For more information, visit www.caregiving.org