By Lisa M. Petsche
One in ten Americans over age 65 and almost half of those over 85 have Alzheimer’s disease or a related disorder, according to the Alzheimer’s Association. Alzheimer’s disease is the most common form of dementia (loss of cognitive functioning) and involves breakdown of nerve cells in the brain. Affected persons gradually lose the ability to interpret information and to send messages to their body to behave in certain ways.
Mental changes include memory loss; difficulty carrying out routine tasks; disorientation to time and place; difficulty adjusting to new places and situations; loss of language skills; and decreased judgment. Mood-wise, there may be anxiety, decreased expression or inability to control emotions.
Some common behaviors are wandering away from home and becoming lost; repetitious behavior; sundowning (escalation in behaviors in the late afternoon and early evening) and altered sleep patterns. Other challenging behaviors may include illusions (misperceptions of reality), hallucinations (distorted sensory experiences not founded in reality), delusions (false beliefs); paranoia (suspiciousness); and agitation.
A wide variety of interpersonal strategies and environmental modifications have been found to be successful in managing, if not reducing, confusion, agitation and frustration. Psychotropic medications may be used to treat some of the more severe behavioral symptoms. However, because they are a chemical form of restraint, they are generally considered as a last resort. Moreover, many dementia-related behaviors do not respond to medication.
If you are a caregiver of someone with dementia, you may find the following behavior management strategies helpful in looking after your relative.
- Learn as much as possible about your relative’s disease and its management, and educate family and friends to help them understand. (Your local chapter of the Alzheimer’s Association is an excellent resource.) Knowing what to expect and how to deal with challenges can go a long way to reduce anxiety and foster a sense of control.
- Try to identify an underlying cause for behaviors of concern. It’s helpful to keep a log that includes triggers, strategies attempted and your relative’s response. To some extent it’s a matter of trial and error as to what works with a particular individual, and even then it can vary from one occasion to the next. With patience and creativity, though, you will develop a repertoire of strategies you can draw from to help prevent or manage dementia-related behaviors.
- Use a low-pitched voice to convey calmness and reassurance. Be conscious of your facial expression and other body language as well.
- Use simple words and short sentences. Avoid clichés.
- Keep questions to a minimum and avoid open-ended ones, especially those that begin with Why or How. Allow plenty of time for a response.
- Simplify tasks and break them down into manageable steps, communicating them one at a time. Demonstration may help. Try different words when your message is not getting across.
- Offer limited choices – for instance, “Would you like coffee or juice?” rather than “What would you like to drink?”
- Respond to your relative’s mood when their words don’t make sense – for example, “It sounds like you’re feeling sad.” Listen, show empathy and provide reassurance.
- Use humor to try to deflect a tense situation.
- Be patient and allow ample time to carry out activities.
- 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. Instead of debating facts, focus on feelings or use distraction if your relative becomes argumentative.
- Learn to recognize early signs of frustration and be prepared with some calming strategies to head off problematic behavior – for example, putting on soothing music, giving a massage or serving a favorite snack.
- If your relative becomes aggressive, remain calm, back off and give them space. Retreat and seek help if you feel threatened.
- Establish and stick to daily routines.
- Provide meaningful activities to occupy your relative’s time. Investigate available day programs in the community.
- Prominently post a calendar for marking events and appointments and keep easy-to-read clocks around the house.
- Keep frequently used items in a consistent, easily accessible spot. Labels may be helpful. Store valuables and items that could pose a danger – including car keys, knives and toxic substances – in a secure place.
- Keep rooms well lit to eliminate shadows. Minimize glare by removing mirrors and covering shiny surfaces.
- Minimize noise from televisions, radios and telephone ring tones.
- Avoid changes to the environment and don’t allow clutter to accumulate. Consistency and simplicity are key.
- Avoid situations involving crowds, noise or unpredictability.
- Ensure your relative eats nutritious meals, gets adequate exercise and rest, and has regular medical and dental check-ups.
- When your relative appears agitated, investigate physical causes such as pain, hunger or need for toileting first, since these needs are easily addressed.
- Arrange a doctor visit if you notice sudden changes in your relative’s functioning, mood or behavior, which may indicate an acute (treatable) health problem – a urinary tract infection or medication side effects, for example.
- If you have ongoing concerns about your relative’s mood or behavior, request a referral to a geriatric mental health service.
Do your best not to take upsetting behavior personally. Remind yourself that “nuisance” behaviors – such as repetitive questioning and hoarding things – and agitation are not intentional, but rather part of your relative’s disease. All you can do is learn to manage symptoms to the best of your ability.
Find a way to connect with other caregivers who understand what you are going through and can share creative strategies for handling difficult situations. This kind of support is invaluable.
Finally, recognize that feelings of frustration, sadness and anger are all normal reactions – for both caregivers and care receivers. Rather than dwell on them, though, focus on how you can make each day as enjoyable as possible for your relative and you, given the present circumstances.
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.