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.

 

Austin Aneke (University of Salford)

Title of Project: An Exploration of the role of Neighbours in Providing Support and Care to Older People Living with Dementia in their own Homes.

Contact Details Phone – 07881767878 Email: a.aneke@edu.salford.ac.uk

 

LAY SUMMARY

People now live longer because of better health and medical services. But ageing comes with a lot of health and social issues, including care and support problems.

It is therefore necessary to better understand how support is given to older persons in the community, especially those living with dementia.

While most other studies focused on support provided by kin carers (family) related to the older people living with dementia in the community, this study focuses on identifying the nature of support as provided by non-kin persons; who are not related to the person living with dementia that they may be supporting, in the community.

In particular, this study is investigating the nature and experiences of support as provided by Neighbours. This research therefore aims to find out the experiences, level, and types of support given to older people living with dementia in the community, by Neighbours. The study also aims to find out the nature of support provided and how the relationships develop in the context of care and support.

The reason for this study is because the nature of support as provided by non-kin carers like neighbours (not related to the people they support) is not properly understood. The study will therefore add to our understanding of informal care especially in situations where family members are dispersed and unavailable to support.

What Participants will do

Dementia participants

Participants will take part in an interview either via Zoom, Skype, or Microsoft Theme or by Phone Call (whichever is the participant’s preference), lasting for about one hour. The conversation will centre on the experiences of care and support as received by the older person living with dementia, from his/her neighbours.

Neighbour Participants

Participants will take part in an interview either via Zoom, Skype, or Microsoft Theme or by Phone Call (whichever is the participant’s preference), lasting for about one hour. The

conversation will centre on the experiences of care and support as given to older people living with dementia in the community by neighbours.

Participants we are looking for

We are looking for two types of participants. Participants living with dementia in the community, and participant, who are neighbours supporting older people living with dementia in the community.

Older people living with dementia

We are looking for 7 older people 65+ living with dementia in the community, who are being supported NOT by family members but by non-kin carers like Neighbours. The nature of support they receive may range from help with personal care, paying bills, and housekeeping including tidying up, meal preparation, and dressing and undressing, support with accessing the community, shopping, managing bills and letters or any other type of support activity.

Neighbours/Friends Who Support Older People Living with Dementia

We are looking for 7 persons who support an older person neighbour, living with dementia in the community. The participant shall be 18+. Such support as given may range from- personal care, paying bills, and housekeeping including tidying up, meal preparation, and dressing and undressing, support with accessing the community, shopping, managing bills and letters or any other type of support activity.

-The neighbour/friend must NOT be related to the older person receiving support, and also not paid for the support given

-must not be providing support in a professional capacity.

-must be providing support on a regular basis for at least the past 3 months.

-must physically live close to the older person living with dementia, receiving support, i.e. in same street, opposite street, or close neighbourhood.

-the neighbour may also be giving support only when the older person is unwell with other illnesses other than dementia.

-the neighbours must be 19+, and can be of any ethnicity and gender.

-the language for interview is English.

 

 

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

To find out more, contact Ruth Unstead-Joss via 0203 131 4695 or ruth.unstead-joss@rcot.co.uk; or Jenny Mac Donnell on 0203 131 4696 or jenny.macdonnell@rcot.co.uk

 

 

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.

 

Why consult?

 

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.

 

  1. Family carer experiences of personal care and bathing of a person with dementia
  2. Eye Movement Desensitisation Reprocessing (EMDR)
  3. Development of personalised film and television viewing to meet the changing needs of a person living with dementia
  4. Carers’ experiences of employer support with their caring role
  5. Carer’s experiences of Virtual Reality technology use with people living with dementia
  6. 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

 

 

 

 

Can you help us understand more about resilience and distress in unpaid caregivers during the COVID-19 pandemic?

We are seeking participants who are either 1) long term caregivers, or 2) people not currently in a caregiver role, to take part in this online study.

 

With increasing number of people suffering from long-term physical and mental health conditions, more individuals end up in long term caregiver roles for loved ones. This can have a significant impact on the caregiver’s wellbeing. Many caregivers report psychological distress and the impact of COVID-19 and social distancing will increase stress for many people, but may have particular implications for caregivers. Understanding how people remain resilient to the stress of COVID-19 and whether this differs between those who have been long-term caregivers, and those who have not, is vital in order to identify new interventions to help support caregivers during times of national crisis such as COVID-19.

 

All participants must be over 18 have fluency in English, and normal or corrected to normal vision. Caregivers must have been in an unpaid caring role for at least six months, caring for an individual with multiple sclerosis, dementia, cancer and/or a mental health condition.

 

If you would like to take part, you will be invited to complete a series of questionnaires and a simple computer task online at a time that suits you.

 

The online questionnaires and task will take approximately 35 – 40 minutes to complete. The questionnaires will ask you about your thoughts, emotions, and mood. The task involves ordering sets of words into sentences. To contribute towards your time, you will have the chance to enter a prize draw to win 1 of 20 £10 prizes, 1 of 2 £50 prizes, or 1 of 2 £100 prizes.

 

If you are interested in the study, please visit:

https://kclbs.eu.qualtrics.com/jfe/form/SV_eLQEWeDymGK5E5n

 

You can also contact Emma or Hannah in the research team by email on or emma.wilson@kcl.ac.uk or hannah.c.krzyzanowski@kcl.ac.uk.

 

Research for the Department of Psychology, King’s College London.

 

Ethics ref: HR-19/20-14617

 

 

Caregiver Survey COVID-19

 

Dear all,

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.

 

Here is the link to the survey.

Do not hesitate to contact me for further questions and clarifications.

Thank you, and stay well,

 

Ranak Trivedi, PhD

Assistant Professor

Department of Psychiatry and Behavioral Sciences

Stanford University

ranakt@stanford.edu

 

 

 

 

 

 

Study information sheet can be found here.

 

 

Study Title: Eating, drinking and care for people with dementia: How can we best support family carers?

Organisation: University College London

Project Description:

We would like to invite you to take part in a research study led by University College London entitled ‘Eating, drinking and care for people with dementia: how can we best support family carers?’

People with memory problems or dementia may have problems with eating and drinking. This may get more difficult in the later stages of dementia. Families have told us that they can find it difficult to help their relative with eating, drinking and swallowing.

We want to understand from you as someone who has memory problems or dementia, or as someone who cares for someone with advanced dementia, how you think people should be best supported to continue to eat and drink. We want to develop an information resource about eating and drinking for people with dementia in the later stages and those close to them. We want to hear your thoughts. We would like your input on what we should include in the resource.

We are looking for people living with dementia or carers of people with advanced dementia to take part in interviews (lasting 1-1.5 hours) either at their own homes or at UCL premises. We are interested in interviewing people from a variety of different cultural and ethnic backgrounds to ensure that we elicit as wide a range of views and opinions as possible.

Participants who take part in interviews will be provided with a £20 one for all gift card. If willing to travel to UCL, we will be able to refund travel costs.

Inclusion Criteria:

To be able to participate, people living with dementia will have a clinical diagnosis of any type of dementia, mental capacity to provide informed consent and be able to read and speak English. We will not be able to include people living with dementia who are unable to provide informed written consent or where there are clinical or social concerns that preclude them being approached. For carers to participate, they must be able to read and speak English.

Other information:

Interviews will be recorded on a digital recorder. This will be professionally transcribed by an external professional transcription service. Once the interview has been transcribed, we will ensure that you will be identified only as a number, so you can’t be identified. After this, the recording of our interview will be destroyed. All information collected about you during the research will be kept strictly confidential. You will be assigned an ID number. This information will be collected, stored, handled and processed by the research team at University College London. Whilst we may use a few direct quotes from interviews, you will not be able to be identified in any reports, publications, or presentations.

Ethical Approval:

Yes (Research Ethics Committee Number: 18/0577)

Outcome of study:

Results from the study will be presented at conferences and published in journals. If you wish to have a copy of the study results sent to you, please let the research team know. The results will be used to develop an information resource.

For more information please get in touch:

Contact details: Dr Nathan Davies (senior research fellow), Dr Yolanda Barrado-Martin (research fellow), Dr Pushpa Nair (research fellow)

pushpa.nair@ucl.ac.uk; y.barrado@ucl.ac.uk; n.m.davies@ucl.ac.uk; OR telephone 02078302932