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.
CASE STUDY: Knowledge of life stories is vital
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.
Therapeutic lying is when a carer of a person with dementia responds to a false statement that the person with dementia makes, with the telling of a ‘fib’ or a ‘white lie’ to minimise the person’s distress. It’s considered an alternative approach to truth-telling and/or correcting the person with dementia when to do so would distress and harm them.
Our study confirmed that the acceptability of therapeutic lying as an approach, carries the caveat that it is being used to promote and safeguard the wellbeing of the person with dementia. The appropriateness of this approach can therefore only be determined on a case by case basis and this strategy has to be used in a respectful way, mindful of the person’s dignity, autonomy and self-esteem.
Rather than prescriptive guidelines carers should undertake an individualised assessment that enables a judgement to be made as to the best approach to be taken in any given context.
A key requirement is that the carer must know the persons with dementia including their preferences and what their families think. In the context of nursing home care the detailed life history/life story of the person with dementia is considered crucial.
There are a number of strategies available to a family member in this context. Sometimes when a person with dementia is looking for a dead spouse it may indicate they have what we would call an ‘unmet need’. They may be lonely or want someone to confide in and it’s understandable their spouse would have been that person.
Spending time with the person with dementia and listening to their stories may be all that is needed. Sometimes when they are looking for their dead spouse, by just saying ‘tell me a bit about Mary your wife, how did you meet her.’ the person with dementia will often get distracted and focus on and enjoy telling you about their spouse and forget about looking for them.
It is clear that a discrepancy exists between health professionals’ use of therapeutic lying and respective health professional ethical guides which stipulate that lying to patients is inappropriate. This has serious practical implications for health professionals.
The evidence from our small study, which is confirmed in other work, is that many health professionals use therapeutic lying to reduce distress to the person with dementia despite the fact that their codes of practice and ethical guidelines state otherwise.
We think that there is a real need to review the regulatory frameworks to include reference to and clarification of the use of therapeutic lying and in this way protect healthcare professionals and the person with dementia.
We conducted focus group interviews with 14 people with dementia living in the island of Ireland. They said 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.
The perception of the acceptability of lying ranged from ‘never acceptable’ to ‘acceptable under certain circumstances’. They indicated that characteristic of a good or acceptable lie is the intention to benefit a person. Acceptable approaches were distracting or avoiding as opposed to outright deceiving.
Interviews with 18 unpaid carers, again from Northern Ireland and the Republic, found they also viewed the acceptability of lying as a continuum ranging from “never acceptable” to “acceptable under certain circumstances”.
In their interviews, carers expressed concern that lying could cause mistrust, impacting negatively on their relationship with the person with dementia and they worried that “going along with” or seeming to accept the person’s mistake could make confusion worse.