Denial challenges families in Alzheimer's caregiving
By Mayo Clinic staffOriginal Article: http://www.mayoclinic.com/health/alzheimers-denial/MY01922
- With Mayo Clinic health education outreach coordinator
Angela Lunde
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Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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Nov. 15, 2011
Denial challenges families in Alzheimer's caregiving
By Angela Lunde
A couple months back I read a comment from one of you that stuck with me. It was from a woman (I'll call her Norma) whose mother has mild Alzheimer's. Here's some of what she said:
"My brother insists that we not fix our mother's meals and we let her do it (she is struggling) ... he says she only has very mild short term memory loss (and therefore believes she will figure it out) ... I feel my family is in denial about mom's condition & looking for yet another reason to stay uninvolved."
The theme of family members in denial comes up frequently on this blog. In previous posts, I've addressed why denial is so common, the role it serves and the detrimental consequences of getting stuck in denial. Yet, putting the notion of denial aside for a moment, most of us caring for someone in the early stages of a dementia go through this sort of dance where we waver between promoting independence and offering help.
We see things changing and notice the person losing the ability to do what they once could. Often we're reluctant to step in and take over as it may feel like we're giving up on the person or crushing their dignity. Yet, it can be heart wrenching to watch them struggle. We want desperately for things to stay static and for the person (and us) to maintain independence.
And it gets even more blurred, this dance of knowing when to push independence and when to step in and help (or take over) because it's not always simply a problem of memory or forgetfulness. Sometimes it's a decline in processing.
For example, it might seem logical that Norma's brother think that his mom should be able to remember how to fix her own meals. After all, she's been doing it for 50 years. And longer term memories that have been over learned are generally better preserved.
Here's the deal though — most persons diagnosed with Alzheimer's lose some ability early on to sequence or plan out an activity, to organize, initiate and monitor actions. This is called executive functioning.
Think about the steps involved in fixing a meal: deciding what to make, identifying ingredients, putting the items or recipe together in a particular order, concentrating and often multitasking. Preparing a meal or following a recipe that includes several steps is difficult and sometimes unachievable even in early dementia due to changes in the brain that are responsible for processing.
I think we'd all agree that people with Alzheimer's aren't choosing to give up skills of daily living such as fixing meals, managing finances, or driving. They wouldn't choose to forgo their independence, and they aren't lazy or unmotivated. The truth is, people with Alzheimer's can't "just try harder" and it's not realistic to expect them to do all they used to do.
I realize though that some family members will still not get it. Quite possibly they're in denial. From time to time, we're all in denial about various aspects of our life. It's how we cope — denial masks emotions of grief, loss, fear and uncertainty. I ask you to do your best to be kind, gentle, and calm in approaching a family member in denial. Anger will only cause them to dig their heels in deeper. And when we resist, blame, or reject, we stay trapped in our own anger.
I don't mean that you can't actively work to make things better with family members — I simply suggest that you make peace with the way things (and others) are today. Choosing to operate from a place of acceptance is a form of self-care.
"If he could, he would."
- a wife and caregiver
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