Raising a child with autism and caring for a parent with end-stage Alzheimer’s disease are obviously very different experiences. But for the caregiver, there’s a lot of common ground, too.
The fact is, taking care of someone who suffers from cognitive problems -- rather than physical ones -- requires different expectations and a special set of caregiving skills. So whether it’s autism, Down syndrome, dementia, or a brain injury, what makes caring for a person with cognitive problems distinct? And as a caregiver, what do you need to know? Here are some answers.
This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
Seeing a family member become sick and physically disabled is terribly difficult. But being with a loved one who is in good physical health but has serious cognitive problems is devastating in its own particular way.
When your mom with Alzheimer’s disease sits across from you at the table, she might look perfectly normal – the same as she always did. But she isn’t the same anymore. The gulf between the appearance and the reality can be difficult to handle, and it’s something that caregivers are faced with daily.
It can also be difficult to get sympathy or understanding from friends or family members for what you’re going through as a caregiver. There may be no outward sign of your loved one’s illness -- no wheelchair or crutches or oxygen tank to help them understand. After talking to him for a few minutes, your neighbors might think your dad with dementia seems as sharp and funny as ever. Your friends may say that your son with autism or daughter with Down syndrome seems like any other kid.
You know differently. You know the backbreaking effort that goes into caregiving, and you know the pain of having a loved one suffering from a cognitive problem. Not getting that recognition and validation can make caregiving especially difficult and lonely.
Cognitive Problems and Caregiving: Specific Issues
There are several other issues that caregivers of people with cognitive problems need to cope with.
Memory problems. Alzheimer’s disease, Parkinson’s disease, strokes, brain injuries, and other conditions that cause dementia can devastate a person’s memories. Conditions such as multiple sclerosis can also cause memory problems, although they may be subtler.
For a caregiver, memory problems can be incredibly frustrating. You can no longer rely on the person for basic information – when she last took her medications, or saw a doctor, or had a shower. With severe dementia, the memory loss becomes so extensive that a person can no longer care for herself.
Communication problems. If you’re a caregiver, communication with your loved one is crucial – it’s the only way to know if you’re giving him what he needs. But with conditions that cause cognitive problems, even basic communication may be difficult or impossible.
Children with autism often have very delayed speech and some have lifelong difficulty communicating. As MS and Parkinson’s disease progress, they can also diminish a person’s ability to talk. A parent with dementia may be able to speak clearly, but what she says may no longer make much sense.
Caregivers are often forced to guess about what their loved ones with cognitive problems want. That can leave them constantly worried that they’re missing something -- that their loved ones are trying to tell them something that they can’t understand.
Behavior problems. Though behavior problems vary according to the condition and age of the person you’re caring for, people with cognitive disorders may have trouble self-regulating their behavior. Emotional outbursts are common with many cognitive problems. At its worst, a person’s behavior can become violent and dangerous, either to you or to himself.