In mid-March, USA Today reported that the number of unpaid caregivers for loved ones with Alzheimer’s disease (AD) is 37% more than last year1. This translates into nearly 15 million unpaid caregivers who are providing routine care in a private home environment to someone with Alzheimer’s and other forms of dementia. That’s because there are now an estimated 5.4 million people living with such diseases and conditions in the U.S. alone. In fact, AD is the sixth leading cause of death in the U.S. and the only one among the top ten that has no prevention or cure, according to the Alzheimer’s Association.
It’s easy to talk big picture when we hear about the estimated 17 billion hours of unpaid care time valued at over $200 billion annually. But the sad reality is that each and every hour – each and every individual – represents a single, unique burden of untold stress, pain, and sorrow.
We must be there to shoulder the load. It is our legacy as Americans and it is our human responsibility. Supporting respite care in a local church or other not for profit with our financial donations and gifts of time is but one pathway. There are many other, indirect forms of help that can be provided because there are so many realms of need. There is physical maintenance and repairs to the person’s home, gardening and lawn maintenance around the house, cooking, shopping, and even providing hands on care such as feeding, entertaining, and just escorting on walks.
If we are involved in full-time, part-time, or simply intermittent time as a family friend or relative, it is likely we will be involved with toileting and even encounter “accidents” a person with AD experiences. How do we react? It’s important to respect the dignity of the AD person. We need to watch for nonverbal cues that a person with AD is sensing the need to urinate or have a bowel movement, as they may begin tugging at a zipper or unbuckling a belt. Learn to look for facial cues sending such messages. There may not be much warning. Get them in simple clothing, looking for elastic waistbands instead of belts and Velcro fasteners instead of buttons or even zippers. Even those with severe dementia and impairment often do care when an accident occurs. Reassure them quietly that they shouldn’t worry and that everything will be fine. Remember to speak in simple, short sentences, such as “sit here” once reaching the toilet. Agitated or suddenly raised voices can be unsettling and even alarming to them. And if clothing is soiled, change it and carefully cleanse the skin and pat it dry afterwards. Use the special soaps and moisturizers that condition the skin and help prevent rashes. Remember that older skin is always drier and more subject to chafing, irritation, and even tears. If absorbent products are needed, carefully select them to find the right size and the best fit. Look for high absorbency to draw the urine away from the skin until the product can be changed. NAFC can direct you to resources to help you with the selection of high quality, high performance, affordable options. Cheap, inferior product only raises the risk of skin damage and leakage that soils and stains upholstery and outer garments. Above all, be patient – with the person who has AD and yourself!
Nancy Muller, PhD
Executive Director – National Association For Continence
Marcus MB, March 15, 2011, Burden climbs with Alzheimer’s cases, USA Today,7A.