IDEAL Covid-19 Dementia Initiative (IDEAL CDI) Update on qualitative research
The aim of the qualitative research is to gain insights into concerns and issues encountered by people living with dementia and their carers during lockdown to inform future policy and practice. Data gathering has taken the form of telephone interviews with people living with dementia and their carers and monitoring of relevant websites and discussion forums.
21 telephone interviews have been conducted. Interviews have revealed how people are coping in very different ways but in general terms people are either:
• Coping well with no or only minor difficulties
• Coping but with some degree of difficulty
• Only just coping and experiencing significant difficulties
A theme of ‘emerging from lockdown’ has emerged from the more recent interviews. People are experiencing a mixture of anticipation and anxiety. Some important messages we are hearing include:
• The need to target practice responses according to levels of coping; including the provision of personalised information.
• The need to provide reablement to recover abilities lost or impaired.
• The need for formal carer assessment and respite services post-lockdown.
• The value of maintaining and increasing investment in ‘just checking’ services.
• Anxiety amongst some people living with dementia about re-emerging into public space and the need to build dementia friendliness into the ‘new normal’.
• The value of developing dementia inclusive community support for the future.
• Reminders of the importance of strong links with other specialist services e.g. domestic abuse; and for self-funders to have equal access to social care support.
Many of these messages are also reflected in the content of relevant websites and discussion forums. Follow up interviews with a smaller group of people who are coping with some difficulty or just coping are planned for week beginning 27th July. In addition, interviews with a small group of black and minority ethnic participants have been undertaken and are currently being analysed with a view to identifying any particular issues and concerns they have encountered.
INCLUDE (COVID-19 in dementia) study is hiring
INCLUDE, an IDEAL-related study that is looking at how the COVID-19 pandemic has affected people with dementia and carers, is looking to recruit a Graduate Research Assistant to conduct telephone interviews with IDEAL participants. Interviews will include quantitative and some qualitative questions. Further details can be found in the job advert. Closing date for applicants is August 3rd.
Interdem select IDEAL publication as article of the month
30 March 2020
Interdem, a pan-European network of researchers interested in psychosocial interventions in people with dementia, has selected our article that was recently published in Age and Ageing as article of the month. The article in question was interested in whether self-ratings of quality of life, life satisfaction and well-being made by people with dementia were similar to informant ratings made by carers using a complex analytical technique. What we found was that while the ratings differed each rating had a similar association with other aspects of everyday behaviour suggesting that both self-ratings and informant ratings may offer reasonable sources of information about people with dementia.
New IDEAL Programme newsletter available
25 February 2020
If you are interested in finding out more about the IDEAL programme of work, please read our newsletters. We have just released a new newsletter which updates you on current progress with the study, the work we are doing that focusses on with people with more advanced dementia and an article from our researchers in Lancashire.
Selected IDEAL Publications to date
31 December 2019
As this is the end of the year we thought we would highlight some of the cross-sectional IDEAL publications that have been published in 2019.
In January our two main IDEAL publications were published in Alzheimer Disease and Associated Disorders. One publication focussed on factors that were important for person with dementia self-rated living well, and the other focussed on factors that were important for carer informant-rated living well.
We investigated co-morbidities in people with dementia and how these affected quality of life. This article has a linked editorial which discussed the publications in terms of placing it in context of other literature.
We investigated important aspects of everyday activities and how these affect ability to live well in people with dementia, and also found that subjective ratings of depression affect how people rate their own everyday activities and that levels of carer stress affect how carers rate the ability of the person with dementia to manage everyday activities.
Depression was found to have a negative affect on ability of people with dementia to live well, while greater levels of self-esteem, self-efficacy and optimism were found to have positive affect on living well in people with dementia.
We investigated costs associated with living with dementia and found that it costs on average £16000 per year in out-of-pocket expenses and unpaid care. People with Parkinson's disease dementia had on average double of care costs at £34000.
We also took a focus on carer factors too, how these affected people with dementia, how these affected themselves as carers of people with dementia, how levels of self-esteem, self-efficacy and optimism affected living well, and how the relationship quality affected satisfaction with life and quality of life of both the carer and the person with dementia.
A lay summary in plain English of each IDEAL publication can be found on the IDEAL publications page here.
New IDEAL Programme newsletter available
25 June 2019
If you are interested in finding out more about the IDEAL programme of work, please read our newsletters. We have just released a new newsletter which updates you on current progress with the study, the work we are doing to co-produce a quality of life measure with people living with dementia and an article from our researchers in Kent.
IDEAL co-investigator awarded
06 December 2018
Dr John Hindle, a Consultant Physician for the Care of the Elderly in North Wales, has been awarded the 2018 Marjory Warren Lifetime Achievement Award from the British Geriatrics Society. This award recognises his dedication to those living with movement disorders across North Wales and for setting up the first movement disorder clinic in Wales 28 years ago.
You can read more about John and the award here.
IDEAL Programme London Event
26 November 2018
We are hosting a symposium on Wednesday 27th November with key leaders from the public, private and third sectors. We will be disseminating findings from the IDEAL programme with the aim to agree goals and actions to help realise the government’s ambition for a society where people affected by dementia are able to 'live well'.
We will be tweeting from the event. Use the hastag #IDEALprog2018 to follow updates of the day via our twitter page.
IDEAL-2 Protocol published
15 November 2018
The protocol for IDEAL-2 study has been published in BMC Public Health. It is open access, so can be accessed free of charge.
UK Dementia Congress 2018
7 November 2018
Linda Clare (IDEAL chief investigator), Christina Victor (IDEAL co-investigator), Ian Beesley (phtographer) and many of the ALWAYs group presented at the UK Dementia Congress 2018 on 7th November. Around 60 people attended and heard more about the work of the IDEAL programme, linked ALMO project, and the benefits of having a dedicated PPI group fully involved within the research study.
Health services must address multiple conditions in dementia
8 November 2018
Read the latest IDEAL publication 'The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study' click here
National Institute for Health Research blog
23 October 2018
The NIHR, who jointly fund IDEAL with the ESRC, have written a blog highlighting the importance of longitudinal studies and have used IDEAL as an example. It also includes an interview and video with Annie Panton a person with dementia who takes part in IDEAL.
The blog can be found here.
2018 Festival of Social Science
10 October 2018
Booking is now open for our ESRC Festival of Social Science free event on 6th November to be held at Brunel University. Please join us to learn more about the IDEAL programme from Professor Christina Victor and our creative arts-based A Life More Ordinary project from artist Ian Beesley.
Read here for more details of the event and how to book your free place.
New carer quality of life measure released
18 September 2018
A new questionnaire is now available to help clinicians, support groups, charities and academics assess and measure the quality of life of people caring for someone with dementia. The design of the measure - called SIDECAR (Scales measuring the Impact of DEmentia on CARers) - included information from over 600 carers, some of whom took part in IDEAL time 3.
The SIDECAR tool can be freely accessed via the DECIDE project website where there is more information about how it can help improve the quality of life for dementia carers.
Thank you - IDEAL Time 3 completed
18 September 2018
We are pleased to report that we have finished all visits for people taking part in IDEAL at T3 (24 month after initial involvement).
Thank you to all the people who have taken the time to continue to take part, and thanks to all our 29 sites for making it happen!
New MOOC on Dementia and the Arts
18 September 2018
IDEAL linked chapbook ‘Allotment of Time’ recommended reading as part of an exciting MOOC on Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives.
To sign up, and for more information, please visit www.futurelearn.com/courses/dementia-arts
British Society of Gerontology 47th Annual Conference
1 July 2018
IDEAL will be represented at this conference next week at the University of Manchester - if you are attending come along to one of our IDEAL talks scheduled for Friday 6 Jul 2018: 13.00 - 14.30
Masterclasses in Dementia Research
22 June 2018
The Improving the experience of Dementia and Enhancing Active Life (IDEAL) study is pleased to announce the launch of two online masterclasses in dementia research.
- Doing qualitative interviews with people with dementia and their carers/relatives: Tips, strategies and considerations
- Involving people with dementia and carers in research: Recommendations from the Action on Living Well: asking you (ALWAYs) group
Research outside the NHS setting
28 May 2018
A podcast on conducting research in non NHS settings and featuring IDEAL Co-I Dr. Catherine Quinn is available to listen to now.
How you can support people who have dementia to live well...
26 May 2018
Read IDEAL Co-I, Dr Anthony Martyr, Western Morning News article about how 'Many small things can make a big difference'
Do you live near York?
21 May 2018
If you live near York, please come and join us at York Train station at 12 noon on 23 May 2018 for the grand unfurling of a banner produced as part of the ‘A Life More Ordinary’ project. The banner’s theme is the ‘Right to a Grand Day Out’. It has been created by artists Ian Beesley, Ian McMillan and Tony Husband and members of three DEEP (Dementia Engagement & Empowerment Project) groups - DEEP Vibes Scarborough, York Minds and Voices and Face it Together (FIT) in Bradford.
Here's how those with dementia can live a better life - read our review of the literature
11 May 2018
Martyr A, Nelis S, Quinn C, Wu Y, Lamont R, Henderson C, et al. Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being, and life satisfaction in people with dementia. Psychological Medicine 2018.
Exeter exhibition for Dementia Action Week May 21-24
11 May 218
Please come to see the 'A Life More Ordinary’ Exhibition
- University of Exeter, Forum 21st May (9am) to 23rd May (5pm)
- Exeter Guildhall Shopping Centre 24th May (9am-5pm)
People whose lives have been affected by dementia have worked with well-known artists to create insightful images and poems that capture some of their experiences. Join us for Dementia Action Week 2018 as we exhibit some of their work.
Blog: IDEAL 'chapbooks' and positive thinking
11 May 2018
Read our blog about how the artists’ ‘chapbook’ encourages positive thinking about dementia.
Dualities of dementia illness narratives and their role in a narrative economies
Blog: Day in the life of a researcher
Dr Catherine Quinn, gives us a glimpse into her work in her blog 'A day in the life of a researcher'.
From the Negative to the Positive
8 Janurary 2018
The first exhibition produced as part of the 'A Life More Ordinary' project, linked to IDEAL, has now opened at Gallery Oldham. Ian Beesley (photographer), Tony Husband (cartoonist) and Ian McMillan (poet) held a series of workshops in Oldham with the Ragamuffins, a group of people with dementia, their partners and volunteers. Together they have produced an exhibition of images and poems created during the workshops exploring living with dementia along the theme of ‘From the Negative to the Positive’. The exhibition is accompanied by a new chapbook which can be viewed for free online here (PDF, 4.6MB). 'From the Negative to the Positive' runs from 8 January 2018 until 2 February 2018 at Gallery Oldham.