The following content is from The Informer, a publication by the Simon Foundation for Continence.
Alzheimer's disease is the most common form of dementia and affects an estimated 5.3 million Americans according to the U.S. Centers for Disease Control and Prevention (CDC). Alzheimer's destroys brain cells causing loss of memory, trouble thinking, and changes in behavior. It is the fifth leading cause of death for people over age 65 in the U.S.
The CDC also notes that 80% of those affected are cared for in their homes and that 15 million Americans provide more than 17 billion hours of unpaid care, 62% of caregivers are women, and 23% themselves are 65 or older. Those caring for people with Alzheimer's provide care for longer than caregivers of other diseases. According to the Alzheimer's Association, family caregivers are providing care with an economic value of over $200 billion.
The cost of Alzheimer's goes far beyond these statistics to the human toll it takes on the family caregiver and the entire family. The demands of care giving cause a greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions.
The three descriptors that are most often used to describe the caregiver's life are isolation, frustration and exhaustion. According to Joy Spahn, regional director of the Alzheimer's Association Greater Michigan Chapter (quoted in The Grand Rapids Press): "An older adult that is caring for another with Alzheimer's has a 60 percent chance of dying before the person they're taking care of because of the stress."
Due to the nature of the progression of the disease, care giving is a long and changing journey of challenges. A 2018 Fact Sheet published by the Alzheimer's Impact Movement (the advocacy arm of the Alzheimer's Association) states that about one-third of caregivers deal with incontinence. Incontinence, combined with Alzheimer’s, creates a host of challenges. All Informer readers who experience intractable incontinence will well understand the potential stress that incontinence may add to care giving with challenges like loss of sleep, compromised skin, additional laundry needs, and when needed, the cost of absorbent management products.
Advocates for people with Alzheimer’s warn not to assume incontinence is the issue prior to exploring other possible reasons for “accidents”. Among the other causes: inability to find or recognize the bathroom, difficulty communicating the need for a bathroom, an undetected urinary tract infection, side effects of medications, or inability to undo clothing quickly - and some have just given up because they haven’t received the help they need.
There are many changes in the home that can be made to help. Some find that leaving the door to the bathroom open and a light on at all times serve as an adequate reminder of the toilet location. A picture on the door, or painting the door frame a different color can also help, as can a clear path to the bathroom marked with reflective tape.
Once inside the bathroom, there are also changes that should be made, including installing hand rails, being sure the locks can be opened from the outside or disabling them, and putting lids on wastebaskets and other containers that can be mistaken for a toilet.
People with Alzheimer’s have difficulty recognizing things and seeing the depth of an object, thus making the toilet seat a different color from the surroundings will also help. It is suggested that black and red are the easiest colors for someone with dementia to recognize.
There are many criteria that should be considered when seeking the right absorbent product for incontinence management - sufficient capacity to provide many hours of protection to allow uninterrupted activity (sleep, shopping, family activities, etc.); protection from risks to the skin caused by friction, heat, wetness, unbalanced pH; comfortable design; and fit that protects from leakage (thus avoiding the cost and labor resulting from wet bedding and/or wet clothing).
Mistakes that seem to be common include selecting a product on price alone (without considering important attributes such as absorbency and fit) and not searching beyond the drugstore or big box stores as often home health stores will carry different and more absorbent brands. You can find useful information regarding products and devices at the Foundation’s website www.continencecentral.org.
Resistance to disposable products is not uncommon. The person with Alzheimer’s may react poorly to the introduction of wearing a product because they do not understand the need to manage their incontinence. One Alzheimer’s website suggests placing the products in the underwear drawer and removing the regular underwear.
Perhaps one of the most important resources for those caregivers helping someone with Alzheimer’s is information about respite care. Respite care is nothing complicated. It is simply breaks from care giving duties, which can help to ward off burnout. It can be provided in home by family and friends, or from a senior care aide, or outside the home at facilities such as adult day care centers, nursing homes, or a local hospice.
An advantage of respite care not often considered is it will help those being cared for to acclimate to having a different caregiver if unexpectedly the usual caregiver is unable to provide care. The length of respite care varies depending on need and can be as short as two hours for lunch out with a friend, or a long weekend, or even a week’s vacation.
The path of Alzheimer’s disease, although filled with challenges, has opportunities for joy and sharing with loved ones, too. Knowledge gained from the numerous resources to smooth this path can be of immense help.
Consider visiting the websites of organizations that offer care giving tips and information; planning for regular respite breaks; and not hesitating to ask for help when needed. As stated by one caregiver, “The care you give to yourself is the care you give to your loved one.”