Advice for the children of Alzheimer’s patients

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Advice for the children of Alzheimer’s patients
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A gene test can tell you if you’re at risk for Alzheimer’s disease. But major organisations warn people against using these home kits without also getting counselling

Karen’s* 80-year-old mother, Joy, has Alzheimer’s disease. It started innocuously about 10 years ago with occasional memory lapses. Today Joy can’t discern jam from Vaseline, eating both on bread as if starving. Though she used to be a highly respected clinical psychologist, Joy is now incontinent, no longer recognises her husband and uses mash-up words that nobody understands. , which is an umbrella term for disorders affecting memory and thinking.

Both Karen’s maternal grandmother and great-grandmother died late in life of the disease that’s now afflicting her mother too. She’s thinking about taking a gene test that could tell her whether she’s likely to be next. , which claims to show whether your genetic makeup puts you at risk for developing any of up to 33 different diseases, such as rheumatoid arthritis, bladder and bowel cancer, some forms of heart disease — and Alzheimer’s.

Test kits like these are generally delivered to your home. You swab the inside of your cheek or spit into a tube and put the sample back into the collection packet, and a courier picks it up to take it to the lab. Results are returned to you by e-mail after a few weeks. Though companies offering these tests may advise that you talk to a health worker to help you interpret the results, such counselling is not mandatory.

Testing for Alzheimer’s in this way is a contentious issue, because the disease is complex. For one, there are two types of Alzheimer’s — and genes do not have an equal role in determining the outcome in the two.

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