Caring for a loved one with dementia poses many challenges for families and caregivers. People with dementia from conditions such as Alzheimer’s and related diseases have a progressive biological brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, and take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behavior. This fact sheet provides some practical strategies for dealing with the troubling behavior problems and communication difficulties often encountered when caring for a person with dementia.
Dementia behavior: Confusion
Memory loss and confusion become more common as dementia progresses.
Memory loss can lead to confusion and confusion often manifests as a senior asking the same questions over and over, not recognizing formerly familiar people or places, or becoming disoriented. Caregivers who spend many hours with their loved one may hear phrases and answer questions on repeat: “I want to go home!” “This isn’t my house.” “When are we leaving?” “Why are we here?”
Common causes of confusion
Like many dementia behaviors, confusion can have a number of triggers or root causes. Factors that may contribute to disorientation include the following:
Sundown syndrome or delirium. Up to two-thirds of dementia patients experience sundown syndrome, an evening behavioral shift characterized by increased memory loss, agitation, confusion, and anger. “It may not exactly happen at sundown, but there’s always this hour the witching hour where suddenly the same person may completely change,” Hashmi says.
An unexpected change. Did your senior loved one just move to a new place? Did their routine change?
Paranoia and hallucinations. Dementia leads to complex changes in the brain, which can result in delusion. Seniors may see things that aren’t really there, develop false beliefs, or become suspicious of caregivers and loved ones.
Common changes in behaviour
In the middle to later stages of most types of dementia, a person may start to behave differently. This can be distressing for both the person with dementia and those who care for them.
Some common changes in behaviour include:
repeating the same question or activity over and over again
night-time waking and sleep disturbance
following a partner or spouse around everywhere
loss of self-confidence, which may show as apathy or disinterest in their usual activities
If you’re caring for someone who’s showing these behaviours, it’s important to try to understand why they’re behaving like this, which is not always easy.
You may find it reassuring to remember that these behaviours may be how someone is communicating their feelings. It may help to look at different ways of communicating with someone with dementia Sometimes these behaviours are not a dementia symptom. They can be a result of frustration with not being understood or with their environment, which they no longer find familiar but confusing.
Coping with dementia
As dementia progresses, each person will find their own way of coping with, and reacting and adapting to, the changes it brings. Developing these coping strategies can be a gradual and subconscious process.
The practical impact of dementia The psychological and emotional impact of dementia
You are here: Coping with dementia Carers: looking after yourself when supporting someone with dementia Understanding and supporting a person with dementia – useful organisations
Coping strategies may include:
practical strategies – eg setting up reminders or prompts, preparing advance decisions or a Lasting Power of Attorney for the future
social strategies – eg relying on family help, seeking spiritual support, joining new activity groups
emotional strategies – eg using humour, focusing on short-term pleasure or living for the moment, focusing on positive aspects
health improvement strategies – eg exercising more, adopting a healthier diet, cutting down on alcohol or smoking.
If a carer understands the person’s coping strategies, they will be able to support them better.
Handling Troubling Behavior
Some of the greatest challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. You can best meet these challenges by using creativity, flexibility, patience, and compassion. It also helps to not take things personally and maintain your sense of humor.
To start, consider these ground rules:
We cannot change the person. The person you are caring for has a brain disorder that shapes who he has become. When you try to control or change his behavior, you’ll most likely be unsuccessful or be met with resistance. It’s important to:
Try to accommodate the behavior, not control the behavior. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable.
Remember that we can change our behavior or the physical environment. Changing our own behavior will often result in a change in our loved one’s behavior.
Check with the doctor first. Behavioral problems may have an underlying medical reason: perhaps the person is in pain or experiencing an adverse side effect from medications. In some cases, like incontinence or hallucinations, there may be some medication or treatment that can assist in managing the problem.
Behavior has a purpose. People with dementia typically cannot tell us what they want or need. They might do something, like take all the clothes out of the closet on a daily basis, and we wonder why. It is very likely that the person is fulfilling a need to be busy and productive. Always consider what need the person might be trying to meet with their behavior and, when possible, try to accommodate them.
Behavior is triggered. It is important to understand that all behavior is triggered it occurs for a reason. It might be something a person did or said that triggered a behavior, or it could be a change in the physical environment. The root to changing behavior is disrupting the patterns that we create. Try a different approach, or try a different consequence.
What works today, may not tomorrow. The multiple factors that influence troubling behaviors, and the natural progression of the disease process, mean that solutions that are effective today may need to be modified tomorrow or may no longer work at all. The key to managing difficult behaviors is being creative and flexible in your strategies to address a given issue.
Get support from others. You are not alone there are many others caring for someone with dementia. Locate your nearest Area Agency on Aging, the local chapter of the Alzheimer’s Association, to find support groups, organizations, and services that can help you. Expect that, like the loved one you are caring for, you will have good days and bad days. Develop strategies for coping with the bad days.
The following is an overview of the most common dementia-associated behaviors, with suggestions that may be useful in handling them. You’ll find additional resources listed at the end of this fact sheet.
If you’re looking after someone with dementia
Your needs as a carer are as important as the person you’re caring for.
To help care for yourself:
Try to make some time for yourself, but if it’s difficult to leave the person alone, ask if someone can be with them for a while, such as a friend, relative, or someone from a support group