Meeting the Challenges of Alzheimer's Caregiving

By Lisa M. Petsche

A diagnosis of Alzheimer’s disease (AD) is devastating for both the affected person and those close to him or her. A variety of emotions are experienced by the diagnosed person, including denial, anxiety, fear, anger and resentment, embarrassment, loneliness, sadness and despair. Depression is common.

Family and friends provide most of the care that people with AD require. Like their loved one, these informal caregivers experience a wide variety of distressing feelings. They are at risk for burnout due to the physical, mental and emotional toll of caregiving.

It is common to feel that no one understands what they and their loved one are going through. Even if friends and relatives have a good understanding of the disease, they may withdraw out of discomfort, fear or a sense of helplessness. Caregivers become further isolated because they can’t leave the affected person alone and therefore don’t get out much.

Caregiving Tips

If you are a caregiver, you might find the following tips helpful in looking after your loved one.

  • To maximize your loved one’s independence, simplify tasks and break them down into manageable steps, communicating them one at a time. Repetition may be needed, and demonstration is often helpful.
  • Use a low-pitched voice to convey calmness and reassurance. Keep words simple and sentences short. Also keep questions to a minimum and try to avoid open-ended ones, especially those that begin with “Why” or “How.” Offer limited choices (for example, “Would you like coffee or juice?”) to allow your loved one some control without overwhelming him.
  • Buy clothing that’s easy to put on and can be mixed and matched. If your loved one is prone to layering clothes, limit access by storing only a few items at a time in his dresser or closet, and the rest in another location. Alternatively, you may want to try childproof safety latches on drawers; however, these may end up causing frustration for your loved one.
  • When self-feeding becomes difficult, try adaptive utensils, plates and drinking cups–found in medical supply stores–and use finger foods as much as possible. If spills are frequent, stick to easy-care clothing and purchase extra tops and pants (if money is tight, shop at secondhand stores). You may find it worthwhile to use an adult bib or apron, ensuring coverage of the torso and lap. Don’t serve hot foods or beverages until they’ve cooled down enough that they won’t burn you or your loved one should an accident occur. Since people with dementia are easily distracted and confused, clear off the table and offer one item at a time.
  • If your loved one is prone to wandering, consider getting extra locks on exterior doors, or have door alarms installed. You should also register him with Safe Return, a national program of the Alzheimer’s Association. For more information or to register, contact the local chapter or go online to www.alz.org/Services/SafeReturn.asp.
  • Keep in mind that social situations involving more than a few people tend to be over-stimulating and are best avoided. Otherwise, keep your loved one in a separate room–with accompaniment–and have people come in to socialize with him one or two at a time. It’s preferable to entertain at home rather than take your loved one out to an unfamiliar environment to visit with others. If you’d like to accept an invitation, arrange for a friend or relative to stay with your loved one so you can go solo and have a stress-free time.
  • Accept that it’s impossible to reason with someone who has dementia; this will prevent power struggles that can lead to escalation of unpleasant behaviors. When your loved one is fixated on a certain idea or activity, try distraction instead of confrontation.
  • Use humor to deflect a tense situation.
  • Learn to recognize early signs of escalating behavior and be prepared with some calming strategies to head it off–for example, putting on soothing music or serving a favorite snack.

Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.

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