Whether or not your loved one’s dementia diagnosis comes as a surprise to you, them or other family members, it can lead to an onslaught of emotions for everyone involved. In addition to spouses and adult children who may take on caregiving roles, family members of all ages will notice changes in their loved one that may be difficult to understand or cope with. That’s why it’s important to openly discuss the diagnosis with your family members and begin helping them understand what to expect as your loved one’s disease progresses. Though this may feel like a daunting responsibility, especially as you cope with your own emotions, having an open discussion will help other family members to positively interact with your loved one and contribute to their care.
Share the news. You may be hesitant to share your loved one’s diagnosis with family members right away, but it’s typically better to do it sooner rather than later, and especially before your loved one begins displaying significant behavioral changes. Before you share the news, consider writing down what you plan to say and think about how you can best respond to your family members’ reactions. You may choose to tell certain family members separately; it’s recommended you choose what will help both you and them feel most comfortable. Though you may need to tailor the message differently for younger family members, don’t exclude children from the conversation. It’s important that they too understand the changes your loved one may soon exhibit.
Discuss the symptoms. While you do not need to serve as the sole source of information when it comes to your loved one’s disease, you should prepare family members for any behavioral changes they can expect from your loved one. Discuss common symptoms of dementia, such as confusion, agitation and frequent changes in mood, and remind them that while these symptoms can be unsettling or uncomfortable to witness, they are a normal part of the disease. Share proven communication techniques they can use when interacting with your loved one. Advise them to use nonverbal cues, limit distractions, avoid criticizing or correcting, and to maintain a patient and supportive attitude while communicating. Above all, encourage them to see beyond the disease and continue treating your loved one as a valuable member of the family.
Connect them with resources. Encourage your family members to research the disease on their own so they can fully understand the challenges you and your loved one now face. Direct them to reputable sources such as the Alzheimer’s Association, National Institute on Aging and Dementia Society of America. Because this is an emotional process for everyone, you may also encourage family members to seek counseling or the comfort of a support group. Bridges by EPOCH hosts educational presentations and monthly caregiver support groups for family members of loved ones with dementia, and the Alzheimer’s Association offers support groups around the country as well.
A dementia diagnosis can be challenging for the entire family, but educating your family about the disease will lead to better experiences, outcomes and relationships, and it will also better enable family members to assist you with caregiving duties as needed. If you have questions about how to approach discussions with your family following a loved one’s diagnosis, please don’t hesitate to contact me.
