Love in the World of Alzheimer's
MONDAY Dec. 10, 2007 -- Even when Alzheimer's disease robs them of the life they once knew, some people can still find love among the ruins.
And in most cases -- as highlighted by recent news on retired Supreme Court Judge Sandra Day O'Connor -- the spouse or child of the Alzheimer's patient grows to understand and accept the new relationship, experts say.
O'Connor's Alzheimer's-stricken husband John, 77, has found companionship with a woman in the nursing home where he now resides, according to recent news reports. The two spend time together, holding hands, even when Justice O'Connor is nearby, the reports said.
This type of relationship was also the focus of the recent film Away From Her, starring Julie Christie as a woman with Alzheimer's who gradually forgets her husband and forms a new bond with a fellow nursing home resident. Her husband gradually comes to accept the relationship, understanding that it gives his wife comfort and stability amid the confusion that Alzheimer's can bring.
Such an emotional journey is common for caregivers confronted with such a situation, said Donna Schempp, program director of the national advocacy group Family Caregiver Alliance, based in San Francisco.
Most spouses or children of people with Alzheimer's "have responded very positively" to these newfound relationships, which are not uncommon, she said. "Because if the person does not know who you are anymore, it's not a rejection," Schempp explained.
"And in the end, we want the person that we care about to be happy," she said. "Just behaviorally, and in other ways, they are going to be better if they are feeling cared about and nurtured, loved and appreciated."
Experts in Alzheimer's disease say many people are surprised to learn that patients continue to have rich emotional lives.
"People still have their personhood at the core of who they are," said Dr. Peter Reed, senior director of programs at the Alzheimer's Association. "So the effects [of the disease] do not diminish the individual's need for social interaction, it doesn't diminish their need for dignity and meaning in their life."
Alzheimer's typically causes an individual to forget all but those they see near them regularly, he added. "So, people learn familiarity with the people around them," Reed said, and with that, "they become more comfortable."
The persistence of emotional needs after declines in memory makes some sense on a neurological level, another expert said.
"The Alzheimer's pathology starts in the memory and learning areas of the brain and then spreads," said Dr. Gary Kennedy, director of geriatric psychiatry at the Montefiore Medical Center in New York City. "The direction and extent of the spread varies tremendously from one person to the next. For some, their thinking and memory are largely gone, but their emotional expressiveness may be relatively intact."
Emotions may often be less guarded as Alzheimer's advances, with people showing less reticence to express affection, he added. "In some instances, emotional expressiveness may be augmented by the illness -- in other words, inhibitions may be taken away," Kennedy said.
Sexuality can enter the mix as well, and that's where relationships between Alzheimer's-affected patients get more complicated, Schempp said.
Depending on a person' level of cognition, "there's a kind of moral-ethical issue as to when someone can be consensually involved," she noted. "Some nursing homes just categorically say no, other nursing homes work on it on a case-by-case basis. Some nursing homes say no because the families object, and some nursing homes say yes because the families are OK with it."
Schempp said that, in her experience, the adult children of Alzheimer's patients typically have a tougher time accepting this new love than spouses do.
"It's harder for the children -- it's an abandonment, and they feel committed to both parents. How could my mother or father do this?" she said.
That's where educating yourself about the progression of the disease really becomes valuable, she said.
"In our experience, so many people know so little about dementia and yet they are caring for someone with dementia," Schempp said. "It just goes back to the incredible need that we have for people to get informed. It takes a lot of information to really be able to navigate how you care for someone with dementia."
In the end, allowing a loved one to find his or her own peace amid the ravages of Alzheimer's may be the best course to take, Kennedy said.
"As Sandra Day O'Connor and others say, they are just thankful that there is a moment of happiness that comes into their loved one's life," he said.
Find out more about caring for those with Alzheimer's or other illnesses at the Family Caregiver Alliance.
Posted: December 2007