From time to time we will provide information here about research involvement or participation that we think may be of interest to carers. We will look at the quality and focus of research opportunities before posting them on our site, but we cannot be responsible for the conduct of these study opportunities. Researchers are welcome to email Research@dementiacarers.org.uk with a summary of their request to post information. Carers can then contact researchers directly to express their interest.
If you support a relative or friend who lives with dementia, you may be able to help.
Researchers at King’s College London university are doing research about short stays in care homes (known as residential respite) for people living with dementia. We want to hear about the arrangements, expectations and experiences. What do people get out of them, and why do some people decide it is not for them? We would value your help so we can better understand what works well and what could be better.
We would talk to you via phone or Zoom/Skype and offer you £10 to thank you for your time. Please email Laura Cole, if you would like more information or might want to take part: Laura.email@example.com
- Are you currently, or have been previously, a carer for someone with dementia?
- Do you have experience in using Twitter?
If so, please consider participating in an interview to help us understand your opinions and perceptions towards dementia related information on Twitter.
This study is undertaken by a PhD student from University of Strathclyde
You will receive a £20 e-gift voucher from Amazon after completing the interview, as a reward for your participation.
Twitter is accessed by a large number of users who share tweets related to dementia. The ability to spread information quickly, as compared to traditional media, may pose novel challenges for people with dementia and their carers, when it comes to evaluating the quality of content. Understanding how people perceive and judge the information is essential, in order to develop interventions to assess the credibility of dementia information on social media.
For more information about the study, please visit:
If you are interested in participating in the study, kindly provide your contact details to receive a confirmation email within 24 hours, with the interview date and time, as well as Zoom link with a password. https://strathsci.qualtrics.com/jfe/form/SV_eRuiefPuf7ll0Pj
If you have any questions, please email me at: firstname.lastname@example.org
Have your say! Research priorities workshop: Occupational therapy
The Royal College of Occupational Therapists is inviting people with experience of accessing occupational therapy services, their families/carers and occupational therapists to participate in a workshop to finalise the top 10 research priorities for occupational therapy.
The one-day workshop will be held on-line on Monday 27th July from 9:30am – 4pm.
If you would like to participate, please submit an expression of interest by 14th June.
To express an interest and learn more about the requirements for participating visit www.rcot.co.uk/otpsp
Current opportunities to be involved in research design with Dementia Carers Count – June 2020
Below is an overview of our approach for remote research consultation. Please have a look through and decide of you would like to help us shape our research ideas. Normally we would invite family carers for face-to-face consultation but during the lockdown, we are piloting new approaches.
It is good practice to consult and engage with people who are to be affected by research (www.invo.org.uk). Involvement by the public in helping to inform research design is often called PPI (Patient & Public Involvement), certainly in health and social care arenas. The purpose of PPI is to ensure research is undertaken that is of value to those who will be affected by it. Involvement can include helping to choose what is prioritised for research, advice from a lay person’s perspective on who to include as participants, how to recruit participants, how to address any challenges such as research with vulnerable adults, who to share findings with and how etc.
As a minimum, PPI is done to help design a study and funding application but ideally there is PPI throughout a study too if it gets funded. The ways in which PPI representatives want to contribute is negotiated with the research team. People usually make decisions about involvement based on their interests, abilities, time commitment, payment and any other plans to reward their contribution. Who to involve depends on who’s perspective the researcher needs to inform their research. PPI representatives can be NHS patients, people living with a condition such as dementia, residents of care homes, family carers, family members and friends.
Whilst it is often useful to consult patient and carer organisations, this does not strictly give a PPI perspective and it is ideal to speak to PPI representatives directly. Some organisations are able to speak on behalf of people, especially when those people are less able to give their views. This can give very valuable insight from those organisations’ work with people of interest to researchers.
The current pandemic has placed a block on PPI consultation using face-to-face means and restrictions are likely to continue for some time. Meanwhile, here at Dementia Carers Count, we have a number of research funding applications being planned and so we need to consult with family carers using remote methods. Useful approaches may include online surveys, email discussion, telephone consultation and webinars. It is likely we need to give family carers a choice of method for involvement to find one (or more) that best suits their needs and preferences. Below are a list of upcoming research topics we wish to develop funding applications for in the coming months. We are asking you as family carers to look through these and select which ones you want to comment on and by which method.
- Family carer experiences of personal care and bathing of a person with dementia
- Eye Movement Desensitisation Reprocessing (EMDR)
- Development of personalised film and television viewing to meet the changing needs of a person living with dementia
- Carers’ experiences of employer support with their caring role
- Carer’s experiences of Virtual Reality technology use with people living with dementia
- Carer’s experiences of being unable to visit care home residents during pandemic lockdown
If you haven’t been contacted directly by us but you are a carer of someone living with dementia and you would like to be involved in our research consultation on any of the topics above, do get in touch at Research@dementiacarers.org.uk
Caregiver Survey COVID-19
As we all know, COVID19 has been spreading across the world. This may be an especially difficult time for carers/caregivers, that is, those of us who help their family members or friends in managing some health condition.
My team and I at Stanford are conducting an anonymous, online, international survey to understand what it is like to be a caregiver managing any health condition in these uncertain times. We are hoping to use this information to learn what it is like to manage caregiving on top of the pressures of the pandemic, and to develop ways to better support caregivers.
Please help us out by completing the survey if you are a carer, and getting the word out.
Do not hesitate to contact me for further questions and clarifications.
Thank you, and stay well,
Ranak Trivedi, PhD
Department of Psychiatry and Behavioral Sciences