According to the Alzheimer's Association, someone develops Alzheimer’s disease every 65 seconds in the U.S. and more than five million Americans are living with Alzheimer’s. With this growth comes a rise in caregiving for new and existing ostomates who have been diagnosed with a brain disease that causes a slow decline in memory and other important mental functions.
Caring for an ostomate who has Alzheimer’s or dementia can be challenging.
Studies have shown that family members who provide ongoing care for chronic and disabling conditions are also putting themselves at risk of developing emotional and physical health problems. Often, family members have little or no experience with dementia or stoma care and turn to ostomy support groups to connect with others for guidance. In one online forum, an anonymous member expressed frustration caring for her mother’s ostomy. She wrote, “I am really starting to find this incredibly agitating and I know I should be more patient, but after dealing with her poop and pee problems on some level every day for the last year, I am TIRED. I need someone to take over caring for her ostomy and order the correct supplies.”
Whether you’re living with Alzheimer's or caring for someone with the disease, information and resources are available.
Colostomy UK association and the Dementia Association of the United Kingdom created a 12-page downloadable leaflet entitled, “Caring for a person with a stoma and dementia.” Not all persons with Alzheimer’s or dementia will understand how to care for their ostomy, however whenever possible, ostomates with the disease should be encouraged to participate in their own stoma maintenance. The leaflet’s content is based on input from health professionals who care for ostomates with dementia.
A few insights in the publication include:
- People with dementia who are actively involved in changing their bags should be encouraged to wear gloves. This reduces the risk of infection, feces under the nails and fecal spreading.
- Some people with dementia who require their bag to be changed for them might resist. In these cases distraction could help. For instance, encouraging the person to clean their teeth or brush their hair during the process might be helpful. Standing the person in front of a mirror so they can focus on the task they are performing and not the bag change can help.
- Pouching system choice is important. One-piece appliances with pre-cut aperture have the advantage of being uncomplicated for both person and carer. Two-piece appliances, where the flange can remain in place for several days, can help protect the skin when frequent pouch changes are necessary.
No one should face Alzheimer's alone. Whether you provide daily care, participate in decision-making or simply care about someone with the disease, help and support is available from the Alzheimer's Association.