5 things to do after receiving an Alzheimer’s diagnosis
Reaching out and building support networks early can help families cope
Receiving an Alzheimer's diagnosis is a gut-wrenching moment for anyone. On the one hand, the trajectory of your life, whether you’re the person who has been diagnosed or their caregiver, is about to change and is filled with unknowns. On the other hand, this information can bring a sense of relief, explaining any cognitive changes you may have noticed in recent months or years.
Becoming part of the Alzheimer’s community – and it’s a large one, with more than 597,000 people in Canada living with the disease and other forms of dementia – can be an opportunity for people to discover valuable sources of support and information.
“Knowledge is power,” says Michelle Janisse, program manager of provincial programs and clinical operations for the Alzheimer Society of Ontario, a longtime partner of MedicAlert. She’s seen newly diagnosed people reach out to services the very next day while others need months before they’re ready to ask for help – it’s a turbulent time and everyone reacts differently.
However, those who take proactive steps to learn more about their condition, access services and make advanced plans seem to cope better with their diagnosis of Alzheimer’s and other forms of dementia, notes Janisse. “When we talk about planning for the future, the earlier, the better,” she says.
Here are five things you can do after you or a family member receives an Alzheimer’s diagnosis that can make the path ahead smoother.
People with Alzheimer’s and other forms of dementia may cope better with their health when they tap into all available medical and community support, including MedicAlert.
MedicAlert is a strong supporter of the Alzheimer Society and its First Link program, which connects newly diagnosed people with information and services. You need a referral from a healthcare provider to join. After you register, a co-ordinator will get in touch and offer medical information, connect you to the local Alzheimer Society and its services and programs, and help you understand what’s available through the healthcare system.
“Having someone who can help people right off the bat, even if they don’t need those services now, can be so helpful. It’s nice to have someone in your corner,” says Janisse.
A study of First Link showed that people who used it got connected to services 11 months earlier, on average, than those reaching out on their own.
Protect against wandering
About 60 per cent of people with dementia will become disoriented and lost at some point, and they can become distressed or hurt even if they are close to home. MedicAlert’s Safe & Found program can be a game changer. A person’s wandering history, places they are known to frequent, full health information about other medical conditions they may have, triggers, de-esclations, physical characteristics and even photographs are kept securely in the MedicAlert Subscriber Health Information Database (SHID), which can be accessed by first responders who are conducting a search.
The Safe & Found program also uses a special blue ID in both bracelet and necklace form so that first responders and good Samaritans can easily tell if someone has Alzheimer’s or another form of dementia. This visual cue is exactly how Tracy’s mother Jean was recognized by a passerby one hot summer day crossing a bridge 10 km from home. The story is a good example of exactly how the Safe & Found program works.
The Finding your Way program through the Alzheimer Society also offers online information about safety and wandering and has an identification form to fill out to aid authorities in a wandering situation. The site provides guidance around buying location technology, often wearable devices with GPS technology that can assist in real-time tracking of a person who tends to wander.
Janisse hopes families will look to these resources as soon as they can. “Our goal would be to get people connected as early as possible; before there’s a crisis or someone goes missing,” she explains.
Share with others
Many families don’t want to talk about the diagnosis. But having honest conversations is a crucial step in building a support network when you’re ready to get the word out among family and friends. “We underestimate how important community can be for all of us,” says Janisse.
That network of support can make all the difference in how well a family copes, as Alzheimer’s disease progresses. Members of that network – whether they’re friends or family – can help both the person with dementia and their caregivers by dropping in to provide comfort, or a much-needed break.
While asking for help may seem like a burden to others, the reality is that spending time with someone living with dementia can be meaningful for everyone. “People underestimate how enjoyable it can be when you spend time with that person, hearing their stories and their memories,” says Janisse. Just like Roberto, the grandson of 88-year-old Mario, a MedicAlert Safe & Found subscriber who was diagnosed with Alzheimer’s in 2019. Roberto is a Canadian Army reservist and Mario is an Italian Army veteran. While Mario does not recognize most of his family anymore, he does recognize his grandson, with whom he can swap military stories.
Early on, plan to draft power of attorney documents and health directives, plus update your will. Once a doctor has determined that someone is no longer mentally capable, they cannot revise their will or change the beneficiaries on registered accounts or insurance policies. “Empower that person to make those choices,” by dealing with this paperwork soon, says Janisse. You can also store this documentation in MedicAlert’s SHID.
Another critical task: plotting out future care. That might mean looking for home supports and day programs so someone can stay in their home longer, or contacting retirement and long-term care facilities, many of which encourage the use of MedicAlert for their residents. “It’s great to have the time to take the tours and look around,” notes Janisse. .
Some people may fear they need to change their lives to work around their diagnosis. Even if there are cognitive changes, you can still do the things you enjoy, perhaps with some modifications.
Hobbies, social activities and physical exercise contribute to overall health, and brain health specifically, so it’s important to stay engaged and busy. As well, eating a balanced diet supports overall wellness. The Alzheimer Society resource Heads Up for Healthier Living offers some helpful, specific tips on the importance of lifestyle in staying well. MedicAlert is also partnered with McMaster University’s Optimal Aging Portal as another valuable resource subscribers can tap into.
The early weeks and months after an Alzheimer’s or dementia diagnosis can be challenging for many people and their families. “It’s a life-altering diagnosis,” admits Janisse. “But there are a lot of supports and services out there that let people with a diagnosis get connected early on and do as well as possible.”