As a staff member of the national office of the Alzheimer’s Association for the past five years, I have seen some issues from constituents that pop up to surprise us, while others follow a pretty predictable cycle.
Every year, around the holidays, calls to the Alzheimer’s Association’s 24/7 Helpline and posts on ALZConnected, our online message boards, indicate many family members notice the signs and symptoms of Alzheimer’s disease or advancing dementia. This is especially true of out-of-town family members who don’t see the person with dementia every day; they compare the person’s current behaviors with what they’ve seen in previous visits — and the difference may be startling. The out-of-town family member may react by offering uninvited advice and opinions to family members who are dealing with the person’s dementia on a daily basis. And that’s when we hear comments like this one:
“How dare she fly in here from thousands of miles away and say what our mother needs? I’m the one who does everything every day for Mom. Who does she think she is?!”
I think that it’s very natural to resent the advice of someone who is less aware of the daily needs of the person with Alzheimer’s and how much work it can take to meet those needs as the disease advances. But what’s harder to do is to accept that these family members are offering caregivers something very valuable – something that they cannot provide for themselves. They are offering perspective.
When you’re very close to something and looking at it, you see all the details. You can see the lines and veins in a leaf, for example, only when you’re close to it. You can see the effect of a gentle breeze as it meets the leaf and moves it, even slightly. But what you can’t see is the size of that leaf with respect to the whole tree — or a whole forest. For that perspective, you need some distance. And distance is something that daily caregiving just doesn’t allow.
So when the family gets together and someone offers opinions from a more distant viewpoint, it can help to try to see it as information that reflects a different perspective — one that can only be seen clearly when the viewer isn’t too close to the details. And sometimes, those perspectives are ones that can actually provide a measure of safety that hadn’t been considered before.
The best time to think about safety is before interventions are actually needed
Trying to put safety measures into place in the midst of a crisis is really too late to be most effective, especially if they could have avoided the crisis to begin with. Some of the most dangerous situations encountered by people with dementia occur when the person wanders and gets lost.
We know that 6 out of 10 people with dementia will wander at some point in their disease process, and some of them do become lost. This is dangerous, particularly during the winter when it gets dark earlier, the weather is cold and the person may not be dressed appropriately for being outdoors at all. Families often wait to take action because the first wandering incident has not yet occurred, but waiting for wandering to begin before acting means that the person’s first wandering incident will take place without safeguards in place. So when someone provides the perspective that distance can offer, disease progression can sometimes become clearer to the whole family and point out that this is the time to act – before a dangerous situation occurs!
The Alzheimer’s Association has partnered with MedicAlert to offer MedicAlert + Alzheimer’s Association Safe Return® , a 24-hour nationwide emergency response service for individuals with Alzheimer's or a related dementia who wander or have a medical emergency. Together, we provide 24-hour assistance, no matter when or where the person is reported missing. If an individual with Alzheimer's or another form of dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (1.800.625.3780) to report it.
A community support network will be activated, including local Alzheimer Association chapters and law enforcement agencies, to help reunite the person who wandered with the caregiver or a family member. With this service, critical medical information will be provided to emergency responders when needed. If a citizen or emergency personnel finds the person with dementia, they can call the toll-free number listed on person's MedicAlert + Safe Return ID jewelry. MedicAlert + Safe Return will notify the listed contacts, making sure the person is returned home. If caregivers are also registered with the service, the person with dementia will be provided with any needed care if they have an emergency, too. You can get more information in the Safety Services page of the website.
Alzheimer’s Association’s website: http://www.alz.org/safety.
For the holidays, a little perspective can be a wonderful gift, providing safety and comfort for everyone involved.