To lie or not to lie: Telling dementia patients the truth can be upsetting

 

Pat Dromey’s mother suffers from dementia and sometimes it’s kinder to go along with her version of reality. Health Correspondent Catherine Shanahan examines the use of therapeutic lying in dementia care in the context of a new report, Therapeutic Lying and Approaches to Dementia Care in Ireland

Wilma Wessell is in the dark about the death of her husband for the same reason that she sometimes believes she is in Hanover, Germany, and not Drimoleague, West Cork.

Wilma was born in Sulingen, North Germany, in 1923 and later lived in Hanover.

Her father hunted as a hobby, which was common in Germany. She had an older sister who died when she was young and two brothers who died during the Second World War.

She remembers having to run to the air raid shelters when bombs were being dropped. She studied music and opera singing in Frankfurt and went on to become a professional opera singer, featuring in many large productions in theatres across Germany. She even recorded some records. She loves listening to music and her favourite composer is Bach.

Wilma married Bernard Wessell, her childhood sweetheart, in 1948 and it was “love at first sight”. Their love remained steadfast as anyone who knew them could vouch. They had one little girl, Cornelia, in 1950, and Wilma took her everywhere with her. They enjoyed lovely hiking holidays in Germany, Austria and Switzerland with Bernard’s parents, travelling by foot, bus and train.

Cornelia grew up and married an Irishman, Simon O’Keeffe and in 2000, Wilma and Bernard moved next door in Schull to be close to them and their two grandchildren, Oonagh and Liam, now in their 20s. Unfortunately Cornelia and Simon have since divorced but they remain good friends.

Wilma came to Fairfield Nursing Home in Drimoleague in June 2012 and her husband Bernard died in October. A potted history of her life hanging in a frame outside her bedroom door notes that Bernard is dead but explains that she is “not aware of this”.

Wilma is among the 44% of patients at Fairfield with some form of dementia whose framed histories provide excellent clues of what matters to them most. These little resumés are ideal in assisting carers to understand the patient and in helping guide responses when the person with dementia is experiencing a different reality to theirs.

For example, when Wilma thinks her spouse is still alive. Or when another Fairfield resident, Kathleen Dromey, thinks her adult son Pat is still a child and asks what he’s done with his bicycle.

Kathleen’s potted history tells us she came from a family of six and was born in Shanacran, Dunmanway on December 3, 1930. She grew up on a farm and worked hard making butter, which she sold in a local shop. She started school, which she loved, aged four, walking the four miles to and from each day. She also loved cycling and going to dances and it was at one of those dances that she met Mattie Dromey. He asked her to marry him on the first night they met, and they married six months later in 1959.

They moved to a farm in Mamuckley and had five children — Norah, Gerard, Pat, Mary and Anne. She has 11 grandchildren, including two sets of twins, and she loves flowers, baking, music and knitting. She also loves going for walks in the countryside. She came to Fairfield Nursing Home in June 2015 and her doorside resumé says she is very happy there. However, the death of her husband in 2007 made her very sad.

Ironically, Mattie Dromey died from the disease Kathleen had always prayed would get her if it meant she would be spared from mental decline. She had watched her own mother lose her mind and, for Kathleen, cancer was infinitely preferable.

“She spent her life praying she would get cancer if it meant her mind was fine,” says her son Pat Dromey.

“Instead, Dad died in 2007, by which time my mother had been diagnosed with Alzheimer’s. In a way, he was her mind for a couple of years, I suppose.”

Kathleen’s diagnosis was delivered in stark and brutal terms in 2006.

“The consultant just came straight out and told her. It was the worst possible thing to do. He said ‘Mrs Dromey, you have Alzheimer’s’,” Pat says.

“I wouldn’t have wanted him to lie but he could have told her in a different way. He could have said there was medication she needed to go on.” In the end, in an effort to lessen the distress, Kathleen’s children organised for her to go for a brain scan and they told her the outcome was general “wear and tear”. It eased her mind somewhat.

The approach the Dromey family took with their mother, and the one they wished her consultant had taken — of not being completely truthful in order to spare her greater distress — is the subject of two recent reports on therapeutic lying.

One, produced by the Mental Health Foundation in the UK, entitled What is Truth? An inquiry about truth and lying in dementia care, essentially found that choosing not to tell the truth to a person with dementia may be justified in situations where it supports their wellbeing, but should not be taken lightly.

Here at home, a report commissioned by the Centre for Ageing Research and Development in Ireland, and published by the Institute of Public Health (IPH), has similar findings.

The research conducted for both reports included input from people with dementia, as well as formal and informal carers. In the IPH report, the person with dementia expected that the fundamental principle guiding actions by carers “should be the right of the person with dementia to be treated as a human being, equal to all others”. Their perception of the acceptability of lying ranged from “never acceptable” to being “acceptable under certain circumstances”, if the intention was to benefit the person.

“Distracting or avoiding as opposed to outright lying or deceiving” were seen as acceptable approaches.

The report found carers had similar views. “They expressed concern that lying could cause mistrust, impacting negatively on their relationship with the person with dementia.

“They worried that ‘going along with or seeming to accept the person’s mistake could make the confusion worse’. However, it appeared that the benefits of reducing upset for the person with dementia in some circumstances outweighed those concerns.” Economical use of the truth is not something Pat Dromey gets overly stressed about.

“My mother is at a childlike stage. You have to go along with the false statements she makes. When she was still living at home, she would say stuff and I would correct her and say ‘That’s not true,’ and she’d get upset.

“We went through a period of correcting her, but gradually you move on to a greater acceptance of the condition and now I’m more inclined to say ‘That’s right’ even when she says something that’s wrong. It’s less stressful for everyone.”

His conversations with his mother no longer make much sense, he says, she often regards him as a child. When she asks if his bike is outside, he answers “yes” because it he doesn’t, she’ll want to know where he has left it, and the conversation will go around in circles.

“It’s less stressful for her if we go along with her version of reality.” Does he think it compromises his mother’s dignity to go along with what she says when he knows it to be untrue?

“I remember talking to my GP about this — his mother had Alzheimer’s too — and he said it was a disease that robbed a person’s dignity anyway. Some of the physical stuff — incontinence etc — in some ways, that’s even harder for the person to deal with,” Pat says.

Even though his mother was diagnosed in 2006, it was only last year that she went into full-time care. Home help, one hour a day on week days, was instrumental in keeping her at home for so long. That, and the kindness of neighbours who would look after Kathleen if they found her wandering at night or alert Pat to the fact that his mother was out on the road in her nightgown.

In the end, concern for her safety forced the decision to put her into fulltime care.

“She would literally take burning logs out of the stove. We came to the stage where we had to consider a nursing home. We had young kids and we couldn’t be there all the time. We were delighted she got into Fairfield where she would know people from her home place. We were told we can visit anytime, and that’s a great reassurance.”

She dined with Marlon Brando and he was “the perfect gentleman”. She worked on movie sets taking production stills. She travelled the world, from India to Alaska and took photographs for Vogue.

“I was his favourite,” Annette Kemp says of Brando.

“He was my favourite too. He used to take me to dinner. They [Brando and friends] were quite hard drinkers and I couldn’t keep up. But he was a lovely person. He never tried anything on. I was a married woman.”

When it comes to her past, Annette’s recall is terrific, but the present is not always quite as clear. A resident of Fairfield Nursing Home, Drimoleague, Co Cork, Annette, from Kent in southern England, has dementia but this is not immediately obvious. She could easily be mistaken for a staff member and, in fact, sometimes she thinks she is, occasionally sitting in on staff training sessions.

“We go along with her reality,” says Claire McCarthy, assistant director of nursing, not because they condone lying to patients, but sometimes it’s the kindest approach to reducing anxiety and stress.

Seán Collins, nursing home proprietor, explains: “you do what you need to do” if it’s in the resident’s best interests.

“If someone is looking for their wife constantly, what is the sense in repeating that she is dead?” They try to distract instead, or reframe the conversation.

“For instance, we’d show them a photograph of their spouse and say ‘you point out the lovely lady that you are talking about’,” says director of nursing, Maeve Daly. “You divert them, in a way that they are still talking about their loved one, but not in a manner that’s upsetting to them.”

In this context, being familiar with the residents’ life stories is crucial. It allows staff steer conversations, drawing on their knowledge of the person.

Communication with families is also paramount in determining what’s best for residents’ wellbeing. And relatives are encouraged to personalise bedrooms to create a sense of home.

Fairfield operates the Butterfly model of care, which focuses on creating a family-like atmosphere, dividing the home into domestic scale, recognisable houses each with its own small sitting room. Residents are “matched” so that those in the early stages of dementia are in a different grouping to those at an advanced stage. This is designed to give residents the best chance to thrive and to allow staff provide specialist skills to different groups.

Before this model was introduced, “people would be banging on doors, shouting and roaring, wanting to go home”, Maeve says, but now they have a better chance of doing well.

 

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