Truth, lies and dementia

A new report from the Mental Health Foundation and Follow Up Workshop

Toby Williamson – Independent Consultant and Collaborating Centre partner

(formerly of the Mental Health Foundation and report co-author)

Faced with a close family member who has dementia and is accusing you of being an imposter and not related to them, how is one supposed to react? What is the best professional response to a person with dementia believing their deceased husband, wife, or partner is still alive and wanting to see them, and becoming grief stricken every time they are told their spouse has passed away?Is honesty and truth telling the only acceptable response or is it sometimes bettersometimes to go along with the differentreality or belief the person has? Should these experiences be seen primarily as symptoms of a disease or are they important expressions of a person’s identity, history, beliefs, values, wishes, and emotions?

All these questions are addressed in a report that I co-authored, published in 2016 by the Mental Health Foundation. The report, together with a review of evidence, can be downloaded via this link. A training workshop based on the report’s findings and recommendations is available on a commissioned basis (more details below).

The questions described above arise on a daily basis in the care of many people with dementia and pose major challenges, especially when the experiences are causing distress to the person with dementia, and confusion or concern to practitioners and carers. The report summarises an 18 month inquiry conducted by, into different realities and beliefs experienced by people with dementia as the condition becomes more severe. The inquiry was led by a panel of experts including professionals, researchers, people with dementia and carers and supported by the Mental Health Foundation, a UK social research and developmentchitty. It heard evidence from a variety of sources including expert witnesses, an online survey, a literature review, and discussion groups involving people with dementia, carers, and frontline staff.

The inquiry posed two key questions:

  • What do different realities and beliefs (in medical terms, delusions, confabulations, hallucinations, and the like) mean to the person with dementia, practitioners and carers?
  • What is the most helpful response when people with dementia have these experiences, can they be supported to cope positively with them, and can non-truth telling be justified in some situations?

Finding meaning through ‘time shifting’ back to a previous past, unmet needs, coping strategies, and other possible reasons were all considered to be crucial. Language, agency, creating artificial environments (e.g. in care homes) and use of objects (e.g. dolls), rights, ethical and practical concerns about non-truth telling, and established models for intervention were all discussed in detail. The conclusions emphasised the importance of investigating sensitively the meaning of different realities and beliefs, being compassionate, flexible but also consistent in one’s response, documenting what works and what doesn’t, and maintaining a focus on the person’s wellbeing (as well as that of carers).

The report and review of evidence can be downloaded for free via this link and includes useful resources and questions for practitioners and carers to help guide their response.The literature review can downloaded via this link. The report is a major contribution to a particularlychallenging area of dementia care.

A half day workshop, ‘What is truth?’ has been designed,that looks at the key themes, typical scenarios, and recommendations from the report, and their day to day implications for both practitioners and family carers supporting people with dementia.I have delivered the workshop to specialist dementia nurses who gave it very positive feedback,and it can be adapted for other audiences, including those with a more general interest in the issues it raises.

I have now left the Mental Health Foundation but as co-author of the report and co-ordinator of the inquiry I’m aware that it has attracted national interest and connects with experiences many people have in the world of dementia. For more information about the report or the workshop, please contact meat:.

The report will feature in a forthcoming publicationon dementia and values-based practice in the CambridgeUniversity Press book series on VBP, written by Toby Williamson and Julian Hughes, RICE Professor of Old Age Psychiatry at Bristol University.

Toby Williamson

May 2017