Sharing the news that you have been diagnosed with dementia or another form of cognitive decline can be a scary and daunting prospect. You may be worried about how others will react, or how they may treat you differently now that you’re “sick.” According to Doreen Lang, Executive Director of Bridges® by EPOCH at Hingham, says that these are all valid concerns – but being open about your diagnosis will make life much easier.
“Gaining the support of others as soon as possible will help you build the support network you will need moving forward,” says Doreen. “You don’t need to tell everyone right away, but denying or concealing the diagnosis with those who are closest to you will close you off from opportunities to get the best possible help as soon as possible. The sooner you tell your loved ones what’s happening, the sooner you will start getting the support you need.”
While some of your relationships may be tested and strained by the diagnosis, says Doreen, you will find that other relationships will become much stronger. “We’ve heard of and seen so many family members who have rallied around their loved one and enjoyed fulfilling, strong and wonderful relationships throughout the dementia journey,” says Doreen. “This diagnosis is life-changing, but it isn’t life-ending. You still have time to make memories, spend time with your loved ones and gain peace of mind for yourself and your family.
Tip 1: Tell people on your own time.
The first step following a dementia diagnosis is to come to terms with it yourself. This can take some time, and it isn’t a process that should be rushed. Every person is different and may need to absorb the information by speaking with a therapist, a religious leader or even a spouse or loved one. Eventually, you will want to let other people in your family know, but the decision of who to tell and when to tell them is entirely up to you. Doreen suggests having a core group – spouse, children and close friends and family – who will be your “circle of caring” throughout the journey of the disease. This group is the one you will speak with first, because their lives will be most affected. Other family members and friends can be told when you want.
Tip 2: Schedule the discussion.
Telling your close family and friends that you have dementia isn’t something you should casually spring on them in conversation. Experts suggest scheduling a “family meeting” of sorts and finding a place and time where you can have a quiet, relaxed and undisturbed chat with the people you’ve assembled. You may wish to talk to your doctor about the best way to explain your condition, as well as receive any pertinent information that is specific to your disease. Another good idea is to have talking points so that you can explain all the important information right off the bat without worrying about forgetting or getting sidetracked.
Tip 3: Expect different reactions.
It’s possible that you’ll see a wide range of reactions from your family and friends. Some may be in denial, not wanting to accept there’s anything wrong with you. Some may be angry, wondering if there was anything you did that you could have done to avoid this (there isn’t, just so you know). Others may want to throw themselves into helping you right away. Let people experience their emotions and give them time to process what they’re feeling. Try not to be hurt or overwhelmed by their reactions. State that you know this can take some time to process, and let overeager helpers know that you will call on them when you need them, but you don’t necessarily need anything right away.
Tip 4: Remind people of the things you are still capable of.
People may hear the word “dementia’ and assume that you are no longer capable of making decisions or doing anything for yourself. Gently remind them that you are the same person you were before the diagnosis, and that you’re still able to make your decisions/live independently/whatever else they may be concerned about. This is also an excellent time to remind your loved ones that even though the disease may change things about you, it doesn’t change the relationship, history and love you feel for them.
Tip 5: Have resources and tips of your own available.
Even though more and more people are becoming aware of dementias like Alzheimer’s disease, there is still a lot of misinformation and confusion out there. Your loved ones may have questions, or worries, or wonder what is ahead for you. If you have research available, share it with them (alz.org is an excellent resource, no matter what form of dementia you have). You may also wish to ask your doctor about tips to share for family members.
Tip 6: Know that this is just the beginning of the conversation.
There is a reason people say that dementia is a journey. “The diagnosis is just the first step along the path that you and your family are walking along,” says Doreen. “Throughout your progress, you will have to have more conversations with different people about different topics. There are lots of decisions to be made, but knowing that you have the support of the people you care most about will help you – and them – gain peace of mind along this journey.”
If you or a family member have been diagnosed with dementia and want to learn more about how to share the news with others, Doreen suggests connecting with a memory care community in your area. “These communities are places for those with dementia to live, but they are also a source of support, knowledge, compassion and care for everyone involved in a dementia diagnosis,” she says. “Whether you are a resident or not, memory care communities are willing and ready to share information, connect you with resources and make the dementia diagnosis a little easier to navigate.”
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