It’s clear to me that a lot of the advice offered to dementia care partners is given by people who have never cared with/for someone who lives with dementia and/or who don’t appreciate the challenges care partners face.
If they did, they wouldn’t make some of the suggestions they do. “Ask for help,” is a tip I’ve found on just about every Alzheimer’s dementia care website I’ve ever visited.
A woman wades into the sea. She walks out from the safety of the beach. Suddenly the sea floor drops off and she gets caught in a powerful current. She starts to drown. People on the beach notice. A crowd of onlookers gathers at the shoreline. The crowd includes several lifeguards. Everybody watches as the woman drowns. “Call for help! Call for help!” Some of them yell at her, but no one, including the lifeguards, does anything. No one steps into the water. No one tries to save her. No one tries to help her save herself.
Ridiculous, right? A drowning person doesn’t need to be told to cry for help; she needs someone to throw her a flotation device. Even better, teach her how to swim in a strong current before she goes into the water. Most of us know when we’re overwhelmed. Most of us are sensible enough to reach out before we go under. It’s instinctive to call for help when you’re drowning.
Yes, there are exceptions. Denial, pride, the mistaken belief they can do it alone, the fear of being a burden, or the “frog in the boiling water” syndrome may stop some carers from reaching out to friends and family. My experience tells me that’s not the rule. Online caregiver support group posts and comments are replete with rants about family members (siblings in particular) who ignore repeated requests for assistance.
“I’m going crazy here, and they won’t lift a finger,” tired and angry care partners complain.
Unbelievably, some family members make care partnering even more difficult than it need be. Besides refusing to pitch in, they may, among other things: withhold financial support, accuse care partners of being freeloaders, sabotage a care partner’s efforts and purposely act against the best interests of both the person with dementia and the care partner. War ensues.
Positive approach to care pioneer Teepa Snow says four in five families are torn apart in the aftermath of a dementia diagnosis. That’s frightening. Especially if your family is one of the four in five statistics. Conflict adds to the stress that results in care partners getting sick and even dying before their time.
Research shows an estimated 14.7 million family caregivers assist 7.7 million older adults who live in the community rather than in institutions like nursing homes in the United States alone. Research also shows that “compared with people who didn’t offer medical support, caregivers who provided substantial assistance with health care were 79 percent more likely to experience emotional difficulty and more than twice as likely to experience physical problems themselves as well as financial difficulties.”
Care partners turn to social and government services for assistance; they are frequently disappointed. The service providers are often understaffed, difficult to access, and/or poorly designed. Furthermore, so-called “professional” staff may not have the knowledge or training to properly support dementia care partners in ways that are useful, practical and healthful. They’re lifeguards who don’t know how to swim.
Primary care partners in North America, the United Kingdom, Australia and New Zealand decry the dearth of resources available from government healthcare and social systems, which seem in many cases to be broken. Care partners know they need help. In some cases they’re screaming for it as they sink below the waves. If they don’t have the support they need, it may be because they have stopped asking out of frustration. They give up, and then they drown.
The irony is that small things can make a big difference. In a nutshell, here’s what anyone from individuals to organizations can do: find out what care partners need, and then supply it. For example, an individual might offer to:
- Take the person with dementia on an outing (lunch, dinner, coffee, tea, bowling, etc. whatever they are able to still do and enjoy). Repeat as needed.
- Bring over a potluck meal and eat together. Repeat.
- Spend time with the person with dementia doing an activity they enjoy while the caregiver has a few hours of respite. Repeat as needed.
- Stay with the person with dementia for several days to give the care partner without dementia some a break. Repeat.
One of the best things anyone can do is give care partners time away from their care situations. They need breaks. They need respite. On a larger scale, service organizations could find ways to provide respite programs that work.
Care partners want and need help. Don’t add insult to injury by telling them to ask for it, or worse, ignoring them when they do. Don’t stand on the beach and shout advice to people as they drown. Find out what they need and take action.