Much has been written on the importance of family caregiving to eldercare at home. Today, there are an estimated 46 million Americans, according to Opinion Research Corporation, who are directly involved in the care of a family member, elderly or other disabled in some way sufficiently to need assistance with basic activities of daily living. Many of these situations have been noted in research to include continence care, for incontinence, bladder and bowel control problems such urinary urgency or chronic constipation, or safe toileting including at night. There are also studies documenting the stress exerted on the family caregivers specifically due to incontinence, regardless of the level of infirmity of the care recipient.1 Although it has been reported in studies of families that incontinence is cited among the top three reasons for a family member to place a relative in a nursing home or other residential facility, there is little published research regarding the effect of intervention strategies for managing incontinence on elderly family caregivers providing care in their private homes.
Last fall, such a study was completed and published2 in which it was found that the two most stressful burdens both at the outset and after nine months were lack of time for one’s own needs and the impact of the recipient’s emotional and behavioral problems on the family caregiver. The third most stressful burden at the study’s outset was dealing with urinary incontinence, although it dropped to the sixth most stressful burden after the intervention with families was concluded. Intervention strategies such as tips for safe toileting, guidance for product choices, and encouragement for seeking periodic respite care for relief. Care recipients in the study were, on average, 75 years of age with 83% being female. Spouse (60%) and daughter caregivers (38%) averaged 62 years of age, with 74% of the total 59 being female.
Although both studies are on Asian populations in countries other than the U.S., the findings still have relevance for us Americans. First, it helps us acknowledge that the burden of care is great and this burden is magnified when the recipient is also incontinent. Secondly, the burden can be at least partially lifted when people no longer feel trapped or helpless, when there is information and guidance and understanding offered through intervention.
How is it that in the U.S., the wealthiest nation on earth, we have largely turned our backs on especially older family caregivers who are the least equipped to manage a frail, elderly or disabled relative – who otherwise qualifies medically to be cared for by trained professionals in a long term care facility – by denying them education in absorbent product selection and usage and quality absorbent products designed to perform at a minimum threshold? The National Association For Continence has led for 18 months an effort to change this and facilitate the right intervention to ease that caregiver burden and in the process reduce waste, foolish product purchases, and fraudulent practices, while safeguarding both the skin integrity and dignity of the recipient. Read the recommendations, share them, and promote their adoption and implementation in YOUR state.
Nancy Muller, PhD
1 Gotoh M, Matsukaw Y, Yoshikaw Y, Funahashi Y, Kato M, & Hattori R (2009). Impact of urinary incontinence on the psychological burden of family caregivers. Neurourology & Urodynamics; 28 (6): 492 – 496.
2 Li H. (2011), retrieved online at http://www.nursinglibrary.org/vhl/handle/10755/181781, accessed July 13, 2012.