Join our UCL doctoral research! Help us to enhance the delivery of Acceptance and Commitment Therapy (ACT) for people living with dementia.

[Emily_Wilkinson]

A research team and University College London (UCL) are looking for volunteers to take part in a research project investigating what people living with dementia think and feel about a selection of metaphors used in Acceptance and Commitment Therapy (ACT).

Background and Aims

Acceptance and Commitment Therapy (ACT) is a form of talking therapy that is delivered in the NHS. ACT can help people to learn new ways of dealing with distressing thoughts and feelings. This study is aiming to explore how people living with dementia think and feel about a selection of metaphors that are commonly used in ACT. A metaphor can be described as a story that helps to explain a particular idea or concept.

We would like to adapt these metaphors (/stories) to suit the specific needs of people living with dementia.

What will you be asked to do?

If you are living with dementia and are able to provide fully informed consent to participate, then we would invite you to take part in an interview that approximately lasts up to an hour. Regular breaks can be taken, and the interview can be conducted across multiple sessions if that would feel more comfortable. Relatives, friends, carers etc are welcome to join if that would feel supportive also.

Participants will be presented with around four metaphors (/stories) used in Acceptance and Commitment Therapy (ACT), and then asked some questions relating to how they found them.

We would then use this information to help develop an intervention based on ACT for people living with dementia in the future.

Additional information

Patient and Public Involvement (PPI) has been involved in reviewing our whole interview schedule, which includes how we communicate the metaphors (stories).

Participants will receive a £10 Love2Shop voucher for their time.

For more information, please see the information sheet here or email Emily.wilkinson.21@ucl.ac.uk

This study has been approved by the UCL Research Ethics Committee. Reference number: [24461/001]. University College London aims to conduct research to the highest standards of research integrity. Our research is underpinned by policies and procedures that ensure we comply with regulations and legislation that govern the conduct of research; this includes data protection legislation such as the General Data Protection Regulation (GDPR) and the UK Data Protection Act 2018 (DPA). In accordance with these regulations and legislation, UCL’s privacy notice can be found here: https://www.ucl.ac.uk/legal-service...-researchers-health-and-care-research-studies

 

[Knitandpurl]

I am not sure how useful this reply will be to you, if not just ignore it - I would be interested in being involved in this research (my husband has PCA dementia), however I am unable to for that same reason that I am unable to take up other options for talking therapy - my husband does not like me talking on the phone, he eavesdrops, quickly gets annoyed and then starts using interrupt techniques, very much like small children. However unlike with small children you can’t just ignore, silence or otherwise ignore these interruptions. I suspect that this is not unusual behaviour from those living with dementia. But very best of luck with the research, I hope it goes well and turns out to be useful . Speaking for myself I would very much welcome anything that would help with the depression, anxiety and negativity that I battle everyday, currently this forum is my greatest and best support.

 

[JoeOk]

Just to confirm, this member has permission to post

 

[Jessbow]

Sorry, just a couple of thoughts.
Do people with dementia have the ability to learn to stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations that should not prevent them from moving forward in their lives?
An hour is an awful long time for a person with anything other than the very earliest stages of dementia to engage, especially on the telephone

 

[canary]

I was wondering exactly the same @Jessbow

Right at the very beginning, before I realised that there was something really wrong with OH, but we were having lots of arguments, we got sent to couples counselling. It was an absolute disaster - OH could not put things into practise, misremembered what he had been told to do (although he was certain that he was right), everything was my fault and it made our relationship much worse.

 

[Knitandpurl]

I have just read the information sheet (or part of it to be honest). I completely got the wrong end of the stick. I thought the therapy was for carers, rather than the PWD. Obviously my wishful 🤔 thinking. Looking at the criteria for selection for participation the person would have to be in very early stages indeed. I don’t think my husband is that bad, but it’s been a long long time since he could engage in a meaningful hour long interview, or express himself with sufficient cognition. Additionally it has probably been even longer since he could read well enough.

 

[Dunroamin]

I consider myself early stages but an hour on the phone is unrealistic and (with respect) underpins a lack of knowledge of a PWD

 

[Emily_Wilkinson]

Sorry, just a couple of thoughts.
Do people with dementia have the ability to learn to stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations that should not prevent them from moving forward in their lives?
An hour is an awful long time for a person with anything other than the very earliest stages of dementia to engage, especially on the telephone

Hi there, thanks so much for your response!

That is a really good question and it is what we are trying to find out! Often people with dementia experience significant psychological distress but there are limited evidence-based psychological interventions adapted to suit their specific needs. It is therefore really important we continue to test intervention options and adapt them to suit the specific needs of people living with dementia. This will help us grow the evidence base, increase effectiveness of each intervention, and promote choice for people living with dementia.

That is a good point re an hour is a long time! We have decided not to exclude those with more severe cognitive impairment from the research though, as it would be important to learn how we can adapt this therapy for a variety of presentations of dementia. As long as the person living with dementia demonstrates capacity to consent to the interview then we would be really keen to have them on board. We will offer breaks through out the interview for everyone and regularly check in on how participants are doing. Participants are welcome to have a carer or family member present too if that would be helpful or more comfortable for them and we would be happy to conduct the interview in multiple sessions also. If the participant would like to stop the interview for any reason that is absolutely fine. We will be completely led by the participant. Each participant will also receive a £10 Love2Shop voucher for their time and as a token of our appreciation.

It sounds like you have some great ideas, if you know anyone that might be suitable and willing to participate we would love to hear from them.

I hope this helps! Do let me know if you have any more questions or ideas. Feel free to email me also.

Best wishes,
Emily Wilkinson
Trainee Clinical Psychologist
University College London/NHS

 

[Violet Jane]

Do you have any *close* personal experience of someone with dementia? If you haven't then perhaps you should spend some time with someone with dementia or better still a range of people with dementia before starting this research. I question whether the vast majority of people with dementia can meaningfully engage with talking therapies. That's not to say that none can. Reasoning, insight and the recall of strategies and approaches tend to become impaired early on the disease.

 

[Emily_Wilkinson]

I consider myself early stages but an hour on the phone is unrealistic and (with respect) underpins a lack of knowledge of a PWD

Hi there, thanks for your message and for taking the time to read this post!

The interviews themselves won't be conducted over the telephone they will be in person ideally, but if this is not possible, then over Zoom. I appreciate 1 hour would feel like a long time! We will offer breaks and check in on how participants are doing regularly. Participants are welcome to have somebody with them as well and we would be happy to conduct the interview over multiple sittings if that would be helpful. We will be completely led by the participant in terms of how to make it more comfortable for them.

I hope this helps! Do let me know if you have any more questions or reflections. Feel free to email me also.

Best wishes,
Emily Wilkinson
Trainee Clinical Psychologist
University College London/NHS

 

[colpatben]

In a similar vein this is a program that Patsy and I have signed up to take part in.

https://www.alzheimers.org.uk/get-involved/time-dementia-programme

I am sure it must have a mention elsewhere on TP.

It has been designed for us and our PWD to aid understanding of the disease and it's impact on us carers for new medics.

You should have a local co-ordinator so please join up if you can.

Colin.

 

[Emily_Wilkinson]

I consider myself early stages but an hour on the phone is unrealistic and (with respect) underpins a lack of knowledge of a PWD

Hi there, hope you are well! I very much appreciate an hour is a long time! We would absolutely be able to take breaks etc or conduct the interview across multiple occasions. I would love for you to take part if you were at all interested? I would make every effort to ensure you felt comfortable and adapt it to how would prefer. Feel free to contact me on emily.wilkinson.21@ucl.ac.uk (unfortunately I don't have a work number to offer as I rotate between NHS placements every 6 months whilst on training and I am currently in between placements!) but we could discuss further via email or I could call you on a different phone.

Hope to hear from you!

Best wishes,
Emily Wilkinson.

 

[Emily_Wilkinson]

Do you have any *close* personal experience of someone with dementia? If you haven't then perhaps you should spend some time with someone with dementia or better still a range of people with dementia before starting this research. I question whether the vast majority of people with dementia can meaningfully engage with talking therapies. That's not to say that none can. Reasoning, insight and the recall of strategies and approaches tend to become impaired early on the disease.

Hi there!

Thanks so much for your email. I have conducted 7 interviews now and all have gone very well - I think participants have enjoyed themselves and appreciated my visit! Research would suggest that a huge proportion of people living with dementia would benefit from psychological therapies and it is really important to offer them this opportunity, adapted to their needs. Hence why we are conducting this research.

I would love to hear from you if you have any other thoughts or if you know anyone that might be interested in participating!

Best wishes,
Emily

 

[Violet Jane]

@Emily_Wilkinson, you have had one interview with participants. That tells you nothing about people's ability to engage in a series of meetings and, in between those meetings, adopt strategies and reflect on issues which were discussed days or weeks earlier. I'm deeply sceptical about this research and about the prospect of talking therapies working for people with dementia.

 

[Alisongs]

Sorry, just a couple of thoughts.
Do people with dementia have the ability to learn to stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations that should not prevent them from moving forward in their lives?
An hour is an awful long time for a person with anything other than the very earliest stages of dementia to engage, especially on the telephone

Exactly