Involving Families in the Care of Loved Ones with Dementia

Presented by MetLife Foundation


A leader in finding an Alzheimer’s Cure

Content by Alzheimer’s Foundation of America



The effects of Alzheimer’s disease and related illnesses extend beyond the individual to the primary caregiver and other family members, affecting family relationships and changing entire dynamics. By better understanding the disease and learning techniques to cope with an individual’s decline, family members will be more empowered in their caregiving roles and gain the tools that can soften the impact of this disease on the entire family.

Caregiving for someone with Alzheimer’s disease is a monumental role, one that is too challenging for families to face alone. Caregivers can ease their journey if they obtain help from other family members, and then branch out beyond that — to friends, neighbors, national and community organizations, and healthcare professionals.

Understanding Alzheimer’s Disease

Alzheimer’s disease is a disorder that increasingly attacks the brain’s nerve cells over time, resulting in loss of memory, thinking and language skills; and inability to take care of oneself, such as bathing and dressing. Other typical symptoms include changes in behavior and personality. The disease can last from two to twenty years, with an average of eight years from diagnosis. Every case is different, in terms of loss of function, behavior changes and the rate at which the disease advances.

An Introduction

www.pbs.org/theforgetting

Communication Techniques

In facing Alzheimer’s disease in your family, communication is important on several levels. You need to learn how to effectively communicate with the person with the disease; explain the disease to other family members, including youngsters; and openly discuss family members’ roles and issues, such as long-term planning.

To best communicate with someone with dementia, keep in mind that in addition to a person’s intellectual deterioration, your loved one might feel confused, irritable and depressed, and suffer from low self-esteem. Here are some techniques:

• Adjust your expectations. Be patient and kind. For example, allow time for an individual to respond to a question and repeat questions if necessary. Rushing will increase confusion.
• Reassurance is critical. To limit frustration, speak in a calm and reassuring tone. If the individual gets upset and becomes uncooperative, stop and try again later.
• Keep things simple. This includes using simple words, and speaking slowly and distinctly. Break down all tasks into simple steps. Giving too many directions at once or too quickly will increase confusion.
• Even when verbal and comprehension abilities fail, individuals can still benefit from non-verbal communication — body language, facial expressions, voice tone and gestures, when appropriate, to help convey what you want done. For example, point to objects or demonstrate an action, such as brushing your teeth.
• As an individual’s ability to process verbal information declines, the importance of how caregivers communicate — both verbally and non-verbally — increases.


For more specific tips on communicating with individuals with dementia and communicating with other family members about the disease, click on these links:

How to Communicate with Your Loved One

Discussing the Diagnosis with Family Members

Helping Teens Understand the Disease

Changing Family Roles and Rules

Beginning the “Talk” about End-of-Life Care

Communication with Healthcare Professionals (52K PDF)

Behavioral Issues

Individuals with dementia typically exhibit changes in personality and behavior as time goes by. While some behavior problems may be ongoing, others may crop up almost out of the blue. These reactions can be very frightening and challenging for families. They key is to try to head off behavioral issues:

• Pay attention to what your loved one is saying — both verbally and non-verbally.
• Remember that behavior problems result from the disease. Do not take things that the person says and does personally; it is the disease speaking. Understand that trying to argue with someone who has dementia only results in frustration for both the individual and the caregiver. Switch someone’s attention to positive-oriented activities.
• Foster a sense of security and avoid frustration. This can be accomplished by holding to routines, keeping things simple, and using positive reinforcements, such as smiles, a gentle touch, personal attention and praise. In addition, give the individual some sense of control. Being able to "save face" is important to someone who is very confused.
• Think about your own behavior and well-being. Individuals with dementia take cues from your behavior. Maintain a calm manner even if your loved one becomes aggressive or agitated; this can soothe a tense situation and help reduce a person's fears. Assess the situation to protect yourself; should an individual's aggression become violent, be mindful of your own safety first.
• Be creative and use common sense. Try to keep a sense of humor even in the most difficult situations.

For more information on understanding behavior problems and coping strategies, click on these links:

Potential Causes of Behavior Problems

Coping with Anger and Aggression

Ensuring Adequate Supervision at Home

Preventing Wandering

Ensuring Safe Returns for Those Who Do Wander

Family Involvement

In addition to taking care of your loved one’s basic needs, it is important to squeeze in “family time.” This connection helps the mental and physical well-being of persons with the disease, as well as caregivers and other family members. While these activities may look different than past family get-togethers, they can be just as meaningful. Look for activities that:

• Involve socialization and reduce feelings of isolation
• Promote a sense of dignity and self-esteem
• Spark reminiscence
• Provide mental stimulation and physical exercise
• Focus on a person’s remaining strengths
• Are uncomplicated and fail-proof

Keeping the Cheer in the Holidays

The ABCs of Storytelling

Tapping the Power of Music

Activity Books