Sunday May 21, 2017

What does consent look like when you have dementia?

"I’m not sure that she can give consent because she can barely say the word yes. I can barely say, ‘Would you like a  muffin or a cookie?’ and she can’t decide that."

"I’m not sure that she can give consent because she can barely say the word yes. I can barely say, ‘Would you like a muffin or a cookie?’ and she can’t decide that."

Listen 12:20

"My mom has had two relationships since she's been in long term care," says Cassandra Trach.

Her mom, Karen Best, has frontal lobe dementia and early onset Alzheimer's. She's 59-years-old. 

Bob Best, Karen's husband and Cassandra's father, describes his wife as "withdrawn", with little speech.

"I believe right now she does not recognize who myself or Cassandra are. She knows that we're safe people but she does not know who we are."

Bob says he received a call from Karen's home notifying him that they found her in bed with another man — who also has dementia — with no pants on.

"It was one of these things that the home felt that every time they caught or saw or found my wife in a 'compromising' position, they would have to call myself or my daughter. And, it got to be a fair number of times. I remember one weekend there were four phone calls."

It became very stressful for the family because Bob says he didn't know what to do or what he was expected to do.

"This is just me talking about how I feel about this situation. I feel like that's been placed on our lap, to consent on her behalf," says Cassandra.

Cassandra says there's a lot of pressure to figure out what's best for her mother and whether to let the relationship in the home continue.

"I don't know if she fully understands, so I'm not sure that she can give consent because she can barely say the word 'yes'. I can barely say, 'Would you like a  muffin or a cookie?' and she can't decide that...

"And they're never caught in the moment so we still aren't even actually sure what the details are of what's happened. We're still left to guess." 

Bob says it's a tough position to be in, "whether it be me, my daughter, or even the staff."

"My wife is in her 50s, much more active than people in their 80s. Her desires may be a lot more than what they're used to dealing with. In fact, they did come out and say that to us."

In fact, dementia can increase one's desire for intimacy

"I do know that they've told me that my wife is giddy and girl-like and smiles when she's around him. They've also told me that my wife is also the instigator of it as well," says Bob, "But the bottom line is, is she happy? Is she having a meaningful life right now? Because If we took this away from her, what would she have?"

The care home Karen is in has never asked her husband or daughter to consent to sex or intimacy on Karen's behalf. Legally, you cannot consent to sex for another person. 

It's a policy of the department that oversees long term care facilities in their region to contact family members if something like a new relationship develops that the home thinks the family should know about. 

It's also a policy to make sure sexual activity is consensual and everyone involved is capable of making that decision. If a home is aware of non-consensual activity, it will intervene.