Question:
My 57-year-old brother has hallucinations and delusions. What can be done for this? He’s on 25 mil of Seroquel and 25 mil of Levothyroxine for hypothyroidism that he has had for several years. Can his thyroid cause the hallucinations and delusions? He has moderate stage dementia according to an MRI that showed left lower lobe activity. He cries at times and seems depressed to me. We live in Maine and we don’t have a good support system. Can you give me any advice as to his current condition? He lives with me and it’s heart breaking to see him unhappy. He doesn’t register pain, so that makes it difficult also.
Answer:
I am sorry for the challenges your brother and you are experiencing. The cognitive decline, behavioral changes, and other aspects of Alzheimer’s disease (AD) can be stressful for the person experiencing AD as well as family and caregivers. This is true for people without Down syndrome (DS) and is also certainly true for people with DS. We will use the abbreviation DS-AD which is sometimes used for Alzheimer’s disease in a person with Down syndrome.
I appreciate your request for support.
To help manage day-to-day functional, behavioral, and psychological changes, I encourage you to review our 2020 webinar and slides on DS-AD. We shared many techniques to support a person with DS-AD that can help with day-to-day function including some of the psychological and behavioral challenges. These can not only make the person with DS-AD more comfortable, but they can also reduce the workload and stress of the caregiver. In that webinar, there are several suggestions regarding additional ways to get support for you as a caregiver and recommendations to help a person with DS-AD manage their environment. These approaches and techniques can have tremendous benefit for behavior and mood. Near the end of the presentation, we describe several online and phone support groups/resources through which you may find support and connect with others who are going through similar experiences (and who may be able to provide additional suggestions on ways to address the challenges).
In another video presentation that is a little older, Dan Kuhn, LCSW, gave wonderful advice on supporting a person with DS-AD that is still very valuable.
You may also appreciate watching our Alzheimer’s Disease Video Journal in which Bo and her sister, Colleen, who has DS-AD share their journey through the diagnosis and the effect it has on Colleen and her family.
Psychological symptoms are common in people with DS-AD. They may occur early in the disease and, in our experience, can be very challenging aspects of caring for a person with DS-AD.
Depression is a common co-occurring condition or symptom in people with DS-AD. Supporting the person using some of the strategies in the above resources may be enough for some individuals. Evaluating for possible contributing medical causes is also recommended. Hypothyroidism is more common in DS and can cause depression. If a person is not diagnosed with hypothyroidism, checking blood levels of thyroid hormones is important to see if that diagnosis may be contributing. Similarly, for someone (like your brother) with known hypothyroidism, checking blood levels to confirm he is on the correct dose of thyroid medications is important. Sleep apnea, celiac disease, vitamin B12 deficiency (which are all more common in DS) and other physical health conditions can contribute to depression and we consider assessing for those based on the symptoms and physical findings. Many individuals with DS-AD do better with taking an anti-depressant. The medication will often improve mood and reduce anxiety (which is also common in people with DS-AD). Medication choices are influenced by a patient’s particular symptoms and the effects and side effects of the medication. Observation and report of symptoms by family and caregivers are key to assisting with medication selection.
For example, you mentioned pain. If there is concern that a person with DS-AD may be having pain, duloxetine (Cymbalta) may be a consideration since it can treat depression, anxiety, and some pain syndromes. For someone who is not sleeping well and has less appetite, use of mirtazapine (Remeron) might be appropriate. It can stimulate appetite and improve sleep for some individuals. For others, selective serotonin reuptake inhibitors, such as sertraline (Zoloft) or escitalopram (Lexapro) work well.
Hallucinations and delusions may also be seen in people with DS-AD. Levothyroxine is unlikely to cause hallucinations and delusions except possibly if a person is on too high of a dose. Being on too high of a dose of levothyroxine can cause agitation and anxiety and checking the blood level is important.
Supporting the person daily as discussed above and assessing for possible physical causes (e.g., sleep apnea, dehydration, and others) are first steps. Some individuals will have significant improvement with addressing those issues and no additional treatment is necessary. The next question is whether the hallucinations are bothering the person or causing safety concerns. If not, in some instances it may not be necessary to treat them with medication. However, sometimes medications do become necessary. In some individuals, treating the depression with an anti-depressant (as above) may improve the symptoms enough so that an anti-psychotic medication is not necessary. Sometimes an anti-psychotic medication is considered. Quetiapine (Seroquel) that he is on is one example of an anti-psychotic medication. These medications do have a warning from the Food and Drug Administration regarding risk of using these medications in dementia-related psychoses because of potential for increased mortality (death). They are sometimes used in this situation after a medical provider has a discussion with the person with DS-AD (if able to participate) and the family or guardian. The discussion may include the issue of quality of life (how much the hallucinations or delusions are affecting the person) and whether the benefit of addressing the distress the hallucinations and delusions are causing warrants the potential negative effects, even potentially contributing to earlier death. If these medications are to be used, we encourage the lowest beneficial dose to try to minimize side effects.
Thank you for reaching out and we hope these suggestions provide you and your brother benefit.