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We need to give much more consideration to the values we use when supporting and caring for people living with dementia, especially as they are a group that can be at high risk for developing wider mental health problems.
The Mental Health Foundation has published the report of the major Inquiry about Truth and Lying in Dementia Care, commissioned and funded by the Joseph Rowntree Foundation.
At present, more than 850,000 people are living with dementia in the UK, making it an issue that is likely to affect all of us - either directly or through those we love. Although predominantly a condition that develops in later life, the Alzheimer’s Society point out that there are around 40,000 people in the UK living with early-onset dementia (before the age of 65).
One key element to caring for someone with dementia is the interaction when they experience a different reality from their carer or families, especially as the condition progresses. This is one of the most challenging aspects of the condition and can be particularly difficult to manage by the carer.
This means, for example, that someone living with dementia may forget that a loved one has died. What should a carer do if someone living with dementia talks about a deceased loved one as if they are still alive? Tell them the truth, distract them, go along with the conversation or actively lie about the fact the person has died? All of the options have repercussions for the well-being of the person living with dementia and their carer, and the answer is not straightforward.
Whilst it wasn’t in our scope to set out an algorithm to apply to deliver the most appropriate response to someone living with dementia with a different experience of reality, we were able to set out a number of key principles that should drive good practice:
1. Experiences of different realities and beliefs are meaningful to a person living with dementia
- A key role of any carer or practitioner is to find out what this meaning is
- This is a fundamental aspect of good quality care, and should not be considered a luxury agenda item “if there is time”
2. Finding out what experiences of different realities and beliefs mean must be done with an open mind, a flexible, tailored approach and with kindness
- The more a carer or practitioner knows about the life story, personality and values of the person with dementia, the more likely they will be able to understand the meaning behind these experiences
3. Responses and interventions start as close to whole-truth-telling as possible
- In other words, there may be situations where it is known from the start that whole-truth-telling will not be possible
- But moves away from whole-truth-telling should only occur if it would cause unnecessary distress
- ‘Lies’ (as in blatant untruths initiated by a carer or practitioner – as opposed to meeting a person with dementia in their reality) may only be used in extreme circumstances to avoid physical or psychological harm
4. Environmental lies should be avoided
- These are artificial spaces designed to deceive, such as a painted shop front (as opposed to a real small shop within a care setting)
5. Responses should be kept consistent across family carers or staff teams
6. What does and does not work should be documented and shared
- As demonstrated in the above principles, owing to the complexity involved in the employment of untruths within clinical settings, it is beneficial to provide guidance and training in their use - training would also be appropriate for families
- Such training would be best presented within the broader context of ‘effective communication strategies in dementia care’
In the parable of the blind men and an elephant, a group of blind men touch an elephant to learn what it is like. However, as each one only feels a different part of the animal they go away with descriptions that are in complete disagreement. For example, one touches its body and thinks it is a wall and another touches its trunk and thinks it is a snake. This story has been used for centuries to illustrate how one’s subjective experience may be true, but that such experiences are inherently limited when they don’t account for other truths. Similarly, in dementia care, we need to respect and work from an individual’s perception of truth.
Thus, while the inquiry has not come up with a definitive rule, we did conclude that, all things being equal, we should strive to tell the truth whilst accepting that in certain circumstances to do so would cause psychological harm.
The real goal is to ensure that those caring for people with dementia have more time to understand why the reality of someone living with dementia is important to them and to what extent it is an expression of a different unmet need. We hope and expect that this report will help in guiding both carers or practitioners and people with dementia.
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What is truth? An inquiry about truth and lying in dementia care
Commissioned by the Joseph Rowntree Foundation, in 2014 the Mental Health Foundation began an inquiry into our understanding of one of the most challenging aspects of living with dementia, when people with dementia experience a reality or set of beliefs different to those around them. These are the findings of this major inquiry.
Dementia, rights, and the social model of disability
This paper describes the social model of disability in relation to dementia, as well as national and international law that is informed by it or that it connects with.