They often refer to caring for someone with dementia as “the long, sad goodbye.” The reason being is that you are slowly losing pieces of your loved one as the disease progresses. It can be a very challenging experience and one that can take a lot out of you the caregivers. Here are a few tips to help you manage your grief while saying goodbye.
Dementia can change a person’s personality and their behavior. They may act very differently than they used to, and say or do things that they would not have normally done. Family and friends may feel very uncomfortable with these changes, and be confused about why the person is behaving this way.
Often times, these behaviors are due to changes in the brain. The brain has over 100 billion neurons, which are cells that transmit information and messages to the rest of the body through complex networks. Dementia disrupts communication between neurons, causing the neurons to become damaged and die. As neurons in the brain are lost, the behaviors often reflect the parts of the brain that are losing neurons.
What parts of the brain are affected by dementia?
- The frontal lobe controls aspects of behavior and personality such humor, initiation and motivation, and impulse control. It also controls attention and concentration, and helps our ability to multi-task and use short term memory. When damage has occurred in this area, you may notice that a person has a much shorter attention span and has trouble concentrating. They may not be able to follow a television program or story and stay tuned. They may also have much less motivation, and lack initiation to complete tasks they would have normally done, such as cleaning up after themselves or responding to a question. They may become more passive in interacting, however, in some cases, as neurons die in this region, a person may become very disinhibited or impulsive. They may do things they would not have otherwise done such as undressing in public or acting out in sexually inappropriate ways towards others.
- The temporal and parietal lobes play a role in memory and language. As changes occur in this region of the brain, it may be more difficult for the person to find words, recall them, or verbalize their needs. A person may withdraw from conversations and reduce their social engagements with others in order to avoid speaking. They may express frustration, anger, or withdraw from social activities. They may also experience difficulty navigating their surroundings, and experience more frustration and irritability as they feel confused in their environment. This may lead to agitation and wandering.
Some examples of changes in personality and behavior include:
Fred was always proper and faithful to his wife, but lately has been making sexual gestures and saying explicit things to the nurses who care for him.
Jeannie has been a gentle mother and grandmother, but has become aggressive towards others and hits and kicks at her caregivers when they attempt to help her.
Sally was a reserved and conservative homemaker, her behavior has become very impulsive and she frequently approaches strangers and hugs them, laughs and talks loudly, and sometimes shoplifts from stores or undresses in public.
Patients with dementia may lose the ability to express themselves, and their behavior may be a means of communicating. Sometimes a change in behavior can signify another problem. A person who is struggling in their environment may become frustrated that they cannot follow a telephone conversation, follow a recipe, or balance their checkbook. The environment may be too noisy or distracting, leading to increased irritation and agitation. The person may not be able to articulate what is bothering them.
Here are some possible scenarios:
Undressing: May need to use the bathroom. May be too warm or clothes are uncomfortable.
Hitting, Kicking, or Biting: May have pain or discomfort, may be attempting to communicate pain or upset. May have a perceived threat or invasion into personal space, such as when personal care is attempted. May have frustration due to restriction, loss of control, and limited choices.
Crying, Fear, or Avoiding: May be related to an environmental fear. May be afraid of the bath because may believe that the water is deep. May be afraid of a black/dark rug as they may believe (and it may look to them) like a black hole in the ground.
Running Away: May be due to anxiety, or may have a plan or purpose of something they believe they need to do like “I need to go to work!”.
Sexual Behaviors: May misunderstand the context or relationship. May misinterpret the purpose of personal care. May have a longing for intimacy.
Touching Face or Body Part: May have pain or discomfort. May have a dental issue.
How to cope with behavioral changes due to dementia?
- Stay calm. Escalating your frustration will not help the situation, and the person is likely to mirror your fear, frustration, or anxiety. Accept that this behavior is not intentional or meant to be hurtful, and the person is not doing it on purpose.
- Don’t argue. Respond in a calm and caring way, focusing on the feeling and not just the behavior.
- Redirect the person to another task, such as helping with something, or starting a new activity. You can use therapeutic fibbing. Sometimes known as “Love Lies”, this meets the person in their reality rather than arguing with them. For example, a person who insists that they want to drive, you may use a therapeutic fib such as “The car is in the shop for repairs. Let’s take a walk instead”.
- Assess for other problems. When in doubt, check to see if the person might be experiencing pain, have an infection or other condition that might be causing them to be irritable or angry. It is possible that a medication might be causing these changes, and a follow up appointment with their doctor may be needed.
- Remember that changes that are happening now are not likely to last forever. A person’s behavior will change as the brain changes.
- Talk to other caregivers. Joining a support group can help you share your challenges and learn strategies from others to best deal with changes.
This post was written by Cheryl Alvarez, PsyD, Director of Outpatient Behavioral Services at Mind & Memory Program at Mission Hospital.
Dr. Cheryl Alvarez is a licensed Clinical Psychologist, and Program Director at Mind & Memory Program, which was launched in partnership with Mission Hospital and is the first of its kind in the nation. She holds a Master’s and Doctoral degree in Clinical Psychology from the American School of Professional Psychology at Argosy University. Dr. Alvarez is passionate about working with the patients and caregivers to improve their health and increase their quality of life.