Down Syndrome and Alzheimer’s Disease
This week I had the honor to be asked to present at Connecticut's Department of Developmental Services Conference on Aging. I met so many truly dedicated individuals who work with people living in group homes and in the community. They asked me to speak about how to care for people with Down Syndrome (DS) who are developing Alzheimer's disease (AD).
Did you know that people with DS develop a dementia that is almost identical to AD? The main difference in people with DS is the early age at which it presents. Usually in late 40s or early 50s. According to Dr Norberto Alvarez, the reason why AD is more frequent in individuals with DS is unknown. His research stated that markers for AD, in individuals with or without DS, are linked to increased deposits of amyloid beta. His research can be found at http://emedicine.medscape.com/article/1136117-print This reference also describes many assessment tools that can be used to follow and measure changes in individuals with DS and AD.
Dr Alvarez's research has shown that most people with DS will develop AD. This is due to the fact that most people with DS are living to the age of 40 and beyond, thus they are at a greater risk for AD. Studies have found that the frequency of diagnosis of AD in individuals with DS are:
- 10-25% of people with DS had AD by age 40-49
- 20-50% by age 50-59
- 60-75% when older than 60
Signs and symptoms of AD in people with DS are similar to that in people without DS. There is a decline in ability to perform daily tasks, confusion, forgetfulness, disorientation, wandering, exaggerated behavioral traits, and changes in daily routines including sleep patterns and eating. When the person with AD has advanced to mid-stage they are totally dependent for ADLs. By this stage symptoms include eating and swallowing disorders, gait disturbance, the person's communication is drastically reduced, they have minimal social activities, and may experience increased behaviors. In the end stage of AD the person will need complete and total care. There is minimal to no communication, unless communication techniques and approaches are used.
Young people with DS who have advanced AD may require skilled nursing care. Education on DS for the nursing home staff is an important leadership role. Collaboration with group home case workers can help nursing home staff learn more about the person they are caring for, their unique needs and their individualized plans of care.
The professionals at the conference this week were all very interested in discussing: What type of care would we need to plan for at each stage of this disease? How can we "build a plan" to care for people with DS and AD? I urged them to use their clinical expertise to build their plans of care, but to also find ways to remain in the moment. Learn what is special about each person they are caring for. Find ways to bring joy to their days, with songs, music, prayer, animals, hobbies, walks outside and food. The more you learn about the person the better your "plan" for them will be. Also use the approach of "being present" and having empathy for those we care for. I once heard a speaker say "If you met one person with Alzheimer's disease, you have met one person with Alzheimer's disease." Each person comes to their disease with a lifetime of individuality, memories, wisdom and wishes. It is with hope, education, research and empathy we can build the best plan to care for their person centered needs.
Do care for people with DS and AD in your home? What experiences have you had with developing plans of care? What information would help you?