As the primary caregiver, friends and family will look to you for information and guidance. Learning about the neurodegenerative disease causing dementia will help you to answer some of their questions, but you may need a different way to explain it to children. Also, family dynamics can change with a serious illness. Being prepared for different reactions will help you avoid destructive cycles.

Dealing with Family Conflict

Serious illness can ignite or magnify family conflicts, especially when people cope differently when faced with caregiving responsibilities. Some family members will jump in and help to the fullest, while others may deny what is happening or resent the care that you are offering to your loved one. Also, disagreements about financial and care decisions are common. Family members may be scared and angry about the risk of inheriting the disease. Recognizing these differences early on will help alleviate frustration later.

Hold a Family Meeting

Hold a family meeting as soon as possible after receiving a diagnosis. Everyone in the immediate family should know what is happening and have an opportunity to participate in planning the care. Include your loved one, if possible. Discussing caregiving roles and responsibilities, reviewing ongoing problems and describing how members of the family are coping with the illness can help ease tensions and fears. If there are significant tensions between members of the family it may be helpful to have a trusted family friend or advisor there to guide the meeting. Use this meeting to start your written assessment of the situation (see Planning Care), which can then help you divvy up the caregiving tasks. After the initial meeting, schedule regular meetings or conference calls to update your assessment and make changes as needed. You may need several meetings to resolve some of the bigger financial, legal and medical issues.

Helping Children Understand Neurodegenerative Disease

Living with a person with dementia can be frightening and difficult for a child. Behavioral symptoms and memory loss may seem personal to a child. The child may not want to bring friends home. Discuss dementia with your child, but remember that discussing means both talking and listening—and listening may be the most valuable part of the conversation.

• When your child asks questions, respond with simple, honest answers. Don’t be afraid to say "I don’t know," and then offer to try to find out.
• Explain that the changes are a result of the disease. Just as children get colds and earaches, older adults can get illnesses that cause them to act differently. Explain that the brain disease means that the person cannot help or stop the behavioral symptoms. Let them know that no one caused the disease. Young children may think they did something to hurt their family member.
• Focus on the things that your loved one can still do, as well as those that are becoming more difficult.
• Be patient. You may need to repeat explanations on multiple occasions, depending on the age of the child.
• Reassure your child that he or she is loved – no matter what.
• Don’t be afraid to use humor. It often helps if you can laugh about the situation together.
• If your child doesn’t talk about the situation or withdraws from your loved one, ask what changes your child has noticed in your family member.
• Your child’s observations may lead naturally to an exploration of his or her own feelings and worries. Assure your child it’s okay to feel nervous, sad or angry.
• Help your child stay connected to the person with dementia by involving them in familiar activities, such as setting the table together. Even young children can stay connected with a relative by paging through photo albums or listening to music together.
• If your child becomes impatient with your loved one, reiterate that the behavior isn’t intentional – it’s a result of the disease.
• You may have to weigh the well-being of your child against placement for your family member.
• Find other adults such as a scout leader or teacher who can be a role model and friend for your child.
• Webpages like How to Teach Children about Grandparents with Dementia and Dementia Explained might be helpful to review.