Down Syndrome and Dementia: A Patient and Care-Giver Centered Approach

Abstract

LG is a 49-year old woman with Down syndrome (DS). She and 3 other women with intellectual disability live in a house in Delaware. These four women are assisted in their activities of daily living by a small team of round-the-clock caregivers. LG used to need a little help with zippers but chose her outfit and dressed herself. She needed some assistance with food preparation but fed herself. Until early 2020, LG had spent the previous 10 years attending a daily morning gathering with fellow residents after eating a hearty breakfast. She loved pancakes and bacon. She was enthusiastic and friendly, often first to sit and the first to share the expected weather for the day. She played tennis two times a week and had done so for the past 20 years. In late 2019, LG started closing her eyes during morning program and wasn’t the first to share the weather. She did not want to participate in tennis and was easily frustrated by putting on the shoes she had worn for several years, once throwing them across the room. Her balance was off and she had a fall at the courts. After checking her sleep apnea treatment, her thyroid function, her hearing and vision, LG was treated for depression. However, she started eating fewer pancakes at breakfast. She would hold food in her cheek for far too long and lost a small amount of weight as a result. She spoke much more quietly and often would shake her head yes or no when asked a question without a verbal reply. Her eyes were closed for much of the morning though she was awake.