The "Who to tell, how and when?" Intervention

An intervention to support people living with dementia who are fearful of disclosing their diagnosis to others.

Background to the project

There are 850,000 people living with dementia in the UK, with numbers set to rise to 2 million by 2051. Dementia is a syndrome – a collection of symptoms characterised by a decline in and ultimately a loss of cognitive functions. There are several different types of dementia, of which the most common is Alzheimer’s disease. In Alzheimer’s disease there is typically a steady decline in cognitive impairment, this differs in other types of dementia (e.g. vascular dementia) which can cause sudden bouts of decline over time.

One priority identified by people living with dementia and carers is better support following a diagnosis of dementia. Although various organisations are working on funding and providing better post diagnostic support, there is an important step before this that has been overlooked: supporting people to talk about their dementia diagnosis to whomever they want in the way the wish to. For this reason, this research study will adapt the ‘Honest, Open, Proud’ (HOP) programme and evaluate its use in supporting people living with dementia who are fearful of disclosing their diagnosis to others.

The “Who to tell, how and when?” Intervention

The practical aim of this project was to adapt the Honest Open Proud programme for people living with dementia to support individuals to make decisions about who, how and when to tell others in their social networks about dementia.

The conceptual aim of this project was to understand how stigma influences disclosure decisions making (e.g., how people share their diagnosis in social networks) in dementia.

Developing the intervention

A number of different approaches were used. These included:

Systematic literature – to understand how decision-making takes place in dementia
Online stakeholder consultation process, including people with dementia – to gather views and opinions on the contents, format and mode of delivery of the intervention
Discussions with experts by experience – to refine the content of the intervention manual

A conference poster outlining the results of the online stakeholder consultation can be downloaded here:

Bhatt, J., Scior, K., Higgs, P., & Charlesworth, G. (2018). The ‘Who to tell, how and when’ intervention. Poster presented at Alzheimer’s Society Annual Research Conference, London, UK.

The literature review on decision-making in dementia which helped inform the intervention development can be found in the following publication:

Bhatt, J., Walton, H., Stoner, C. R., Scior, K., & Charlesworth, G. (2020). The nature of decision-making in people living with dementia: a systematic review. Aging & mental health, 24(3), 363-373.

The content of the “Who to tell, how and when?” intervention is as follows:

Session Title Contents
Talking about dementia	Talking about dementia – what’s in a name? What might a diagnosis mean for a person’s sense of “who they are” and their outlook on life? What are the advantages and disadvantages of telling or not telling others
Who to tell, how and when?	Different ways to tell others Who already knows and who in your life do you want or may want to tell. Who are you unsure about and must not be told How and when to tell others? What may the reactions of others be?
Support for me, for you, for usSharing experiences of telling others	Planning to tell someone (who, how and when?) Whose diagnosis is it? When other people do the telling Where may you find sources of support

Below you can find the download links for the intervention

You can download the workbook by clicking:

hop_dementia_workbook_v6_participants_workbook_cleanseptember2022.pdf

You can download the facilitators manual by clicking:

hop_dementia_workbook_v6_facilitators_workbook_cleansept2022.pdf

Testing the intervention

Two “Who to Tell, How and When” courses have taken place involving a total of 7 people with dementia and 7 family supporters. Each course involved three meetings using the “Who to Tell, How and When” manual as the basis for discussions. Participants have taken part in interviews to give their feedback on the manual and the sessions. Alongside participant feedback qualitative observation and facilitator reflections were collected.

A full summary of development and preliminary testing can be found in the following publication:

Bhatt J, Ruffell T, Scior K, Charlesworth G. “Who to Tell, How and When?”: Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis. Clin Interv Aging. 2020;15:1393–407.

A video presentation of the development process and preliminary results can be found here:

Empowered Conversations: A conversation with Jem Bhatt, Georgina Charlesworth and Joy Watson

Measuring Stigma in People living with dementia and carers

In addition to developing and testing the “Who to tell, how and when?” intervention two other studies took place where measures of stigma were tested with people living with dementia and carers. The aim of testing stigma measures was to see whether they were relevant and acceptable for participants but also to understand if stigma measures could be used as outcomes measures to see whether the “Who to tell, how and when?” intervention changes how individuals experience stigma.

Results for the carers study are still being written up however, a preprint of the stigma measures study for people living with dementia can be found using the below link:

Bhatt J, Stoner C, Scior K, Charlesworth G. Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia. BMC Geriatr. 2021;1–12.

Statement of Impact

This project provides the first insight into the influence of stigma on disclosure decision-making in people affected by dementia, with findings that have implications for the way stigma and disclosure decision-making in dementia are conceptualised, investigated and addressed in any intervention.

People affected by dementia experience stigma and are subject to the negative psychological and social consequences. It is necessary to build stigma measurement into initial assessments (primary and community care, memory service assessments) with people affected by dementia, and critical for professionals to be aware of the impact of stigma when delivering a diagnosis. Voluntary and health sector organisations seeking to support people affected by dementia need to intervene the consequences of stigma for carers but also support disclosure decision-making for correct, timely support to be provided.

The “Who to tell, how and when?” intervention would be a beneficial addition to the post-diagnostic pathway, in which no specialised support for disclosure decision-making currently exists. The intervention will require further testing and therefore the work of this thesis has laid the foundation for future research that has direct public health benefit in our NHS.

As one of Alzheimer’s Society’s Dementia Research Leaders, Jem Bhatt has presented the work of this project at 14 national, and international conferences, designed and run three workshops for people affected by dementia and continuously engaged and consulted with people affected by dementia throughout.

Jem Bhatt was an author on the World Alzheimer Report 2019 that presented the first stigma prevalence data across the globe for dementia, which has over 1,200 reads. The report featured data from measures developed within my thesis and the “Who to tell, how and when” intervention. In addition to this, her systematic review was published in 2018 and has over 700 reads. Jem Bhatt was awarded an INTERDEM Fellowship to investigate the stigma experiences of people living with dementia in the UK and the Netherlands, data has been collected, and findings from this Fellowship will be published soon.

It is fundamental to create health information materials from the findings of this project for professionals, on how to uphold meaningful participation as an exercise of supporting the rights and provisions of people living with dementia. People living with dementia can remain in the centre of choices that affect them, if professionals have sufficient knowledge and training on how to support decision-making and importantly have an understanding of factors that disrupt this process.

Acknowledgements

We would like to thank all the participants who have taken part in the above research studies, without you all this work would not be possible.

We are grateful to the input from Professor Patrick Corrigan, Dr Jonathan Larson, Barbara Woodward-Carlton, Sheila Carr, UCL Research Advisory Group, Tracey McDermott, Dr Linda Birt and the Promoting Independence in Dementia (PRIDE) Work Package Two team and PPI Group and North East London Foundation Trust.

Funders

This work was supported by Alzheimer’s Society [AS - PhD - 16 – 022], the Economic and Social Research Council [ESRC grant number ES/ J500185/1] and the Promoting Independence in Dementia Project [PRIDE, ESRC grant number ES/L001802/2].

Contact Us

Jem Bhatt – Lead researcher (jemini.bhatt.15@ucl.ac.uk)

Georgina Charlesworth – Principal Investigator (g.charlesworth@ucl.ac.uk)