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Dementia and I/DD

Written by Sherry Neal, RN-BC, CDDN

 

We are all exposed to different syndromes every day in our work. A syndrome is a set of symptoms that consistently occur together. Dementia is like a syndrome but not all people lose the same skills consistently. With dementia, there can be a wide range of symptoms associated with a decline in memory or other cognitive skills that when presented together are severe enough to reduce a person’s ability to perform everyday tasks. You may also hear dementia referred to as Alzheimer’s Disease. Alzheimer’s is just one of many types of dementia, but it does account for 60% – 80% of the cases.

“Alzheimer’s is just one of many types of dementia, but it does account for 60% – 80% of the cases.”

In the neuro-typical population, we expect to see the onset of dementia after the age of 65. However, since persons with I/DD age quicker than neuro-typical peers, the onset of their dementia may occur at a much earlier age, some as low as 35 in certain I/DD syndromes and diagnoses. For a person with I/DD never assume that the changes they are exhibiting are part of their diagnosis or syndrome. Always know the baseline functioning of the person so you can pick up on subtle changes. The typical screens for dementia are generally not appropriate for persons with I/DD because often they never did know the answer to the question in the screening, not just since they started showing symptoms.

Some of the declines to watch for are:

  1. Confusion or problems with recent memory. Long term memory is generally not affected
  2. Getting lost in familiar places
  3. Wandering or elopement
  4. Decline in ability to assist with or independently complete activities of daily living, including toileting
  5. Inappropriate emotional response – crying when they are happy or clapping and smiling when there is a solemn occasion
  6. Unable to follow simple instructions
  7. Loss of ability to identify objects
  8. Change in personality

Anyone would dread such a diagnosis and may experience depression. Death is always the outcome of dementia. Disabilities, mental health and behavioral issues may become more difficult to manage. The dementia diagnosis may have an emotional effect on the staff as well. One might even see depression signs in the staff as they slowly lose someone who helps fulfill their life.

But we can make this whole dementia process more manageable and be proactive. Let’s find out the desires and dreams of the person and try our best to bring those to fruition. Let us do things and provide activities that will delight the person and bring happiness to all. Sometimes we have to be determined and dare to be a strong advocate for the person to continue to live an inclusive and fulfilled life until they are no longer able to do so.