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Post Diagnosis Steps

Discussing the diagnosis

When you learn that your loved one has Alzheimer's disease or a related dementia, you might be torn between keeping it to yourself and telling others. On one hand, shouldering this responsibility alone can be overwhelming. Yet, your concerns about other people's responses may make you hesitant to reveal the diagnosis to family, friends, and, perhaps most importantly, the person with the disease. How will they react? And how will you deal with their reaction?

Following are some suggestions on how to discuss the disease with others.

Consider the person diagnosed:

• In deciding whether or not to tell the person about their disease, be mindful that they may suspect something is amiss long before a doctor reaches a diagnosis. It is their right to know what is wrong.
• Informing the person may enable them to participate in important medical, legal, financial, long-term care, and end-of-life issues. The extent of their input will depend on the current state of the disease symptoms.
• Be sensitive when disclosing the diagnosis, keeping in mind the person's feelings and emotional state, as well as their ability to remember, reason and make decisions. They may not be able to totally understand the diagnosis or may deny your explanation. If this occurs, accept their reaction and avoid further detailed explanations of the disease at that moment.
• Bringing in professionals may help. You may want to disclose the diagnosis at a "family conference" attended by the individual with the disease, other family members and a social worker, as well as a healthcare professional who has experience working with cognitively impaired individuals.
• Plan some simple answers to a loved one's questions, or encourage them to speak with their doctor about concerns.
• Reassure your loved one. Let them know that you will provide ongoing help and support, and do whatever is possible to improve their quality of life.
• When you sense the time is right, provide the person with follow-up information that would be beneficial, such as an explanation of symptoms and the importance of continued care. For example, you may say, "Mom, because of your memory and other problems, you may have to let people help you more than you have in the past."
• Treat the person as an adult, and don't downplay the disease. As the dementia progresses, remain open to the person's need to talk about their illness and its implications-such as their ability to work, drive and manage finances.
• Allow your loved one to express their feelings, which might include anger, frustration and disappointment. Be aware of non-verbal signs of sadness, anger or anxiety, and respond with love and reassurance.
• Watch for signs of clinical depression, which could result from an individual being told that they have a terminal illness, and consult with your physician.
• Investigate community support services for the recently-diagnosed. Support groups for individuals in the early stages of the disease can be helpful in expressing emotions and concerns.

Inform family and friends:

• Be honest about your loved one's disease. You'll probably feel relieved after discussing it with family members and close friends. Be sure to explain that Alzheimer's disease is a medical condition and not a psychological or emotional disorder or contagious virus.
• Use this as an opportunity to educate them about dementia. Offer information about the disease and its symptoms. Refer them to the AFA's toll-free hotline (866.AFA.8484) or local agencies for more educational materials and conferences. Suggest that they attend a support group. The more family and friends learn, the more comfortable they may feel around the person and the more willing to support you as a caregiver.
• Include yourself in the conversation. Explain how the responsibility of caregiving has affected your life or may alter it in the future, so that others will have a better sense of how they can help.
• Ask for and embrace family support. Involving others in caregiving will give them insight into your situation as well as provide you with respite. Have several tasks in mind for people who say, "Please let me know if there's anything I could do to help you." They might go food shopping, accompany you to medical appointments or spend time with your loved one, involving them in a simple game or taking a walk. Suggest that they call before stopping in, however, since too many visitors at one time might create anxiety and confusion.
• Inform neighbors about the person's condition. If they understand the diagnosis, they might be more likely to intervene if they sense the person needs help or to volunteer to assist you in an emergency.
• Recognize that some friends and family may drift out of your life. Some may feel uncomfortable around the impaired person while others may not want to feel obligated to partake in caregiving. Do not let these attitudes interfere with your commitment to caring for your family member and yourself. Seek out caregiver support groups and other community resources to establish a support network and build new friendships.

Be open with children and teenagers:

• Don't overlook the role of children and teenagers in your family member's life. They, too, are affected by a loved one's diagnosis of Alzheimer's disease. Being open with them and educating them about what to expect can help combat fears and misconceptions.
• With young children, keep explanations simple; older children are capable of understanding more. Regardless of the child's age, all explanations should be based on truth. Children need to be told that their loved one is ill, and be given a basic understanding of the illness and its symptoms. They also need to know that they cannot "catch" Alzheimer's disease by being near someone who has it.
• Observe a child's reactions. Fear, anger, sadness, confusion, depression, helplessness, and frustration are common. Provide attention, love and reassurance. Children need some sense of the continuation of normal family life, and to feel comfortable about asking questions as the disease progresses.
• Be aware that children often feel reluctant or embarrassed to bring friends into their home if they live with a person with dementia since they may behave inappropriately. Youngsters need to be assured that adults in the home understand and respect their feelings.
• Determine how you can involve children in age-appropriate caregiving tasks. Young children often are able to relate to a person who has limited verbal ability. Teenagers and young adults often feel valued if they are offered an opportunity to spend time with the person or share some responsibilities.
• Find out about local support groups for children or teenagers. Having peer support and an outlet to express emotions can help them cope with the situation.