It’s Valentine’s Day! Cue the cards, flowers, chocolates, wine and romantic dinners. Let the lovefest begin. But wait! If you are talking about real love, the type that sustains a relationship beyond transient romance and Hallmark moments, look no further than the numerous people we see in our clinics. These are the most dedicated, loving people who nurture their spouses under the most difficult of circumstances. They are caregivers and their spouses have dementia.
Marianne has been taking care of her husband Chet since he was diagnosed with Alzheimer’s three years ago. Her life has completely changed along with Chet’s. She manages almost every aspect of his life, from daily living skills to finances, from social engagements to meals.
“He was always such an independent man, now he depends on me for almost everything. It’s not easy but I wouldn’t have it any other way. He needs me now more than ever,” says Marianne with a stoic smile.
Marianne is a fantastic caregiver. Not only does she do many of the things that Chet can no longer do for himself, she does them with a positive attitude. She makes Chet smile and she ensures that he finds him as much social and mental stimulation as possible. However, in being so kind and loving, she is putting herself at risk.
Having a spouse who has dementia is difficult, demanding and potentially devastating. Watching a loved one, often someone with whom you share a lifetime of experiences and memories, lose both experience and memory, is tough. One of the great values of memories, after all, is that they are shared and when they are just yours, they lose some of their meaning. Typically, a caregiver has to take on added responsibilities, to the point where, like Marianne, they are managing every aspect of the spouse’s life. There is an increased physical and time demand. Caregivers can get swamped to the point of losing their own identities, like the patients they are caring for lose theirs. Time for self-care, hobbies and activities gets consumed with caregiving responsibilities. In addition, people with cognitive decline and dementia tend to withdraw socially and this can lead to isolation and depression in both the patient and the caregiver.
The emotional toll is enormous. Not only is watching the decline of someone you love difficult in its own right, there are other subconscious mechanisms at work. We are programmed to unconsciously imitate others in our environment. That doesn’t necessarily mean that caregivers copy the behavior of their failing spouses but it is likely that being around amnesia, incapacity and disorientation will have an effect. Research conducted by Dr. John Bargh and his colleagues at New York University gave college students the task of creating four word combinations from lists consisting of five words. The lists typically consisted of fairly neutral words. One list consisted of the words “Florida, gray, wrinkle, bald, forgetful.” The research subject students using this list seemed to be effected in an unlikely way. When they subsequently left the research room and walked down the corridor, they did so significantly slower than those subjects who had not been exposed to words associated with aging. When the student subjects were told of the finding they reported that they had no awareness that they were walking slowly and weren’t mindful at all that they were influenced in any way by the words associated with aging. While there is some controversy about this research because the finding hasn’t been regularly replicated, all of us can relate to our emotional response to seeing people we love struggling with daily living tasks and failing in basic mental functions. It impacts us.
All of these massive, competing demands are incredibly stressful, especially, as is often the case, the caregiver is living with the spouse. It’s no surprise, therefore, that being a caretaker increases the risk of being diagnosed with dementia. One of the best studies on this topic was published in 2010. That longitudinal study, conducted by researchers at Johns Hopkins, Utah and Duke universities, followed more than 2000 seniors and found that caregivers of spouses with dementia were sixty per cent more likely to themselves be later diagnosed with dementia than those with spouses who had no such diagnosis.
When hearing such a finding, our minds go into story-telling mode in an attempt to rationalize the data. Does stress account for these findings? Do the spouses share a common characteristic that might account for an increased risk of dementia for both of them? However you try to interpret the data one thing is for sure: it’s hard to reconcile the evidence with a strictly genetic interpretation of the dementias. The evidence, along with a wealth of other data, strongly implicates lifestyle factors.
The fact is that while it is popular to believe that genetics are the major contributor to cognitive decline and dementias like Alzheimer’s, the evidence is rapidly accumulating that lifestyle variables are very significantly related to the onset of the disease. One possibility for the increases risk for caregivers, therefore, is that spouses share lifestyle behaviors that encourage the development of Alzheimer’s and other dementias in both partners.
Our own work, as well as that of other researchers which is summarized in our forthcoming book strongly suggest that various lifestyle factors are clearly associated with dementia. It should be no surprise that the variables known to influence vascular health also impact brain health. The brain needs a good blood supply as much as, if not more than, every other part of the body.
The current nutrition data, for example, show a very strong tendency for the typical western diet consisting of high fats, fried foods, high dairy content and especially high intake of sugar, to be associated with a greatly increased risk of dementia. Conversely, a diet high in fresh fruits and vegetables, legumes, nuts and a very low to non-existent intake of meat, dairy and sugars, is associated with a very significant reduction of dementia risk. The Mediterranean diet, as well as Vegetarian and Vegan diets, are those that seem to be related to a significantly decreased dementia risk.
There is also a mass of evidence suggesting that aerobic exercise confers significant protection against dementia and cognitive decline. Evidence is accumulating that resistance exercise can also provide protection, too. Regular exercise is associated with greater interconnectivity within the brain as well as an increase in brain-derived neurotropic factors (BDNF) that are associated with brain health.
Poor quality sleep is another variable associated with an increase in dementia. Apnea and other sleep-depriving conditions are also related to cognitive decline. We spend almost a third of our lives doing it, so sleep is important in many ways and critical to brain function. Sleep deprivation is bad for brain health especially when it lends to the use, even overuse, of a variety of medications whose long-term use is itself likely to be detrimental.
Relaxation, enjoyment and especially positive social engagement and activity are all related to better brain health. However, with failing mental capacities, people tend to withdraw from the very thing they need — social stimulation. Mental stimulation done in isolation, like doing crosswords or Sudoku puzzles, is probably less valuable than multi-domain integrated activities like social activities that also challenge the mind.
Being a caretaker of a spouse with dementia, therefore, can potentially expose you to lifestyle factors that increase the risk of dementia. The demands of caregiving can lead to poor nutrition, less time and inclination to exercise, decreased quality sleep, stress, depression and social withdrawal, any of which are likely to enhance the risk of cognitive decline in caretakers.
The answer, of course, is not to abandon those brain healthy behaviors, which is easier said than done when caregiving to a spouse at home with diminished capacities. If you have not been practicing brain healthy behaviors then you are increasing an already elevated risk by being a spousal caretaker.
A caretaker ideally practices these brain-healthy behaviors and encourages and enables his or her spouse to do the same, despite their difficulties. There is some evidence that adopting brain-healthy behaviors even later in life might slow down the progression of the disease, something we have seen in our clinic.
Caretakers might then be the very definition of love as they continue to help their spouses deal with dementia, even though such nurturing puts themselves at greater risk for the disease. These people aren’t just caregivers they are love givers.
“It’s hard,” admits Marianne, “but I try every day to make our lives the best they can be and the healthiest they can be. ”
We now have some very strong indicators as to what lifestyle behaviors reduce the risk of cognitive decline. Whether you’re a caregiver or not, is there anything more loving than trying to develop and preserve your loved one’s mental function?