Because individuals with Down’s syndrome are living longer than ever (in general), more are experiencing the onset of dementia. This can be very difficult for everyone to accept, especially if your brother was high-functioning. Odds are your family has become accustomed to having your brother take an active part as a family member. It’s not uncommon for those with Down’s to live at home with other family members into their adult years.
But when the dementia sets in, behavior will indeed change. There’s no way around it. One of the changes will be memory loss, another possibly losing the ability to perform even the simplest activities of daily living. Dressing, exercising, even setting the table or generally helping out around the house might be lost skills. As a result, your brother might begin to withdraw and not want to leave the house due to feelings of insecurity and fear of suddenly unfamiliar routines and surroundings.
A routine is critical for maintaining self-esteem. Always allow your brother to help at whatever the appropriate levels are to boost his self-worth. Provide a failure-free environment, to the degree you can. Make sure family members are on board with this, and have everyone compensate for your brother’s lost duties.
[Note that it’s possible you could forget or temporarily not realize your brother is functioning at a different level. While physical disabilities are typically obvious, Alzheimer’s disease involves the brain, leaving the patient to look quite the same on the outside. You might expect him to be just like he was. This is not realistic. Go with the flow and let him be himself, at whatever stage he is.]
As the sibling of an Alzheimer’s patient, you must allow yourself to grieve. You have lost a person you once knew at a higher level of functioning, and you will continue to lose him more as time goes on. Feelings of shock, denial, anger, isolation, fear and depression can be expected on your part.
Write them down in a journal. Realize you will go through these stages. The final one will be acceptance. You need to get there — for your sake and your brother’s. But even when you get to acceptance, you will continue to grieve at times, and that is normal.
How can you help yourself cope? Gather photos of your brother, you and your family. Look at them. We are given the gift of memory so that we can go back to when times were good, or at least better. This can be a painful activity, but through the pain you can find healing.
Life will be different when an Alzheimer’s diagnosis is added to Down’s syndrome conditions. Lower your expectations. Let your brother do what he can, at the levels he can. If you go into, and remain in, denial, you will push for things that your brother is not capable of accomplishing. Then, you will both become frustrated. Accept him for who he is, where he is. Let him assist with activities that he will feel successful doing. Always find the appropriate level. This may be a continually sliding bar. Constantly assess — activities may be the same kind as before, but just at a different level of expectation — and modify your actions accordingly.
A good, free reference source for any family member of someone diagnosed with Alzheimer’s is