How can I better care for A loved one who has both Alzheimer’s disease and Down’s syndrome? How should I respond to their behavioral changes?
Many individuals who have been diagnosed with Down’s syndrome are living longer and fuller lives than would have been imaginable in past decades. However, as those with Down’s syndrome are living longer, a rise in the number Alzheimer’s cases among these individuals has also been recorded. Regardless of your loved ones level of functioning prior to being diagnosed with Alzheimer’s, the impending threat of further mental deterioration from Alzheimer’s disease can be exceptionally difficult to deal with. Due to the fact that individuals with Down’s syndrome often live with their families throughout their adult lives, family units often become accustomed to the individual’s capabilities. However, with the onset of Dementia, those capabilities, along with behaviors and mannerisms, begin to change. Part of this change involves impaired memory and increased difficulties with simple daily actives like getting dressed or helping out with chores. Individuals in this situation often being to isolate themselves from others and tend to resist leaving their home because of intense feelings of anxiety or fear that may arise from an unfamiliar environment.
In this situation, establishing a routine can be vital tool for maintaining their comfort level and self-esteem. Inviting your loved one to contribute to various family tasks at an appropriate level can provide a much need boost for their sense of self-worth. Work to maintain an environment that evokes as little anxiety as possible - this includes limiting the potential for disappointment or failure in activities. Bearing in mind that their level of functioning will change over time, maintain a sense of flexibility and invite other family members to contribute in ways that will help “fill in the gaps.”
As someone who cares for this individual, it is important that you allow yourself to fully experience your grief. You have, in a very real sense, lost a person that you once knew. Work through your feelings of anger, shock, denial, fear, and depression. Keeping a journal or talking with a support group might be helpful for dealing with these emotions. Work towards a state of acceptance, both for your own sake and for the sake of your loved one.
It is important to allow your loved one to function at their own level. If necessary, lower your expectations. If you have not properly dealt with your own grief, and have become stuck in a state of anger or denial, you risk pushing your loved one into situations they are not capable of managing on their own. This will only result in frustration and hurt-feelings for everyone involved. The importance of acceptance cannot be overstated. Continue to engage your loved one in the activities they are capable of handling and do not force them to participate in the ones that they cannot. Sometimes you only need to modify the way in which the person participates in an activity. While they may have once been responsible for setting the dinner table and pouring drinks, they might now be in charge of making sure that a plate and a drink has already been placed at every seat.
For more information on Alzheimer’s, or any of your other Colorado elder law questions, click here to view our Wills and Trusts 101 seminar or call 303-758-0680 to get in touch with one of our Colorado estate planning attorneys.
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