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Positive experiences in dementia care-giving: findings from the IDEAL programme
- Catherine Quinn, Gill Toms, Isla Rippon, Sharon M. Nelis, Catherine Henderson, Robin G. Morris, Jennifer M. Rusted, Jeanette M. Thom, Eleanor van den Heuvel, Christina Victor, Linda Clare
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- Journal:
- Ageing & Society / Volume 44 / Issue 5 / May 2024
- Published online by Cambridge University Press:
- 29 June 2022, pp. 1010-1030
- Print publication:
- May 2024
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There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.
Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
- Gareth O'Rourke, Claire Pentecost, Eleanor van den Heuvel, Christina Victor, Catherine Quinn, Alexandra Hillman, Rachael Litherland, Linda Clare
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- Journal:
- Ageing & Society / Volume 43 / Issue 10 / October 2023
- Published online by Cambridge University Press:
- 16 November 2021, pp. 2424-2446
- Print publication:
- October 2023
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Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.
eleven - Tackling ageing continence
- Edited by Alan Walker, The University of Sheffield
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- Book:
- The New Dynamics of Ageing
- Published by:
- Bristol University Press
- Published online:
- 09 April 2022
- Print publication:
- 28 February 2018, pp 219-234
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Summary
Introduction
Although every human being answers the ‘call of nature’ several times a day, continence is still a taboo subject. As people age, they typically become less mobile (Mottram et al, 2008) and/or need more frequent ‘comfort breaks’ (Milsom et al, 2001) so maintaining continence becomes a challenge. While incontinence is not a direct consequence of ageing, urinary incontinence affects 55% of women over 65 and 20% of men (Holroyd-Leduc et al, 2004). The prevalence of faecal incontinence is around 1% in the general population, rising to 17% in the very old and as much as 25% in care homes. Many factors contribute to making this condition a major problem for large numbers of older adults. Several studies have shown that urinary system function declines with age (Holm et al, 1995; Pfisterer et al, 2006; Gibson and Wagg, 2017). Another factor is the increase with age of concomitant diseases (such as congestive heart failure, Parkinson’s, Alzheimer's and so on) that can result in problems with continence. In addition, mobility problems are increasingly common in older people; limitation in mobility is likely to cause difficulties with continence simply because the older person finds it difficult to reach the toilet and transfer onto it (Fonda et al, 2005).
Faecal incontinence can often be successfully treated with dietary interventions, careful bowel management regimes, and review of medication, although a small minority of people will continue to suffer with faecal symptoms. Urinary incontinence can be relieved by pharmacological, physiotherapeutic or surgical treatments, but often these treatments do not provide a complete cure and may not be appropriate for some patients, resulting in large numbers of older people needing to cope with urinary continence management issues on a daily basis. Thus, finding effective methods to enable older people to manage continence needs, especially when outside the home, is essential for successful ageing and for the maintenance of a good quality of life (Temml et al, 2000).
The impact of continence difficulties is far more than just the physical effort and expense of continence management; the problem is strongly associated with reduced self-esteem, social isolation and depression (Shaw, 2001). Problems managing continence can be extremely distressing and may all but end wider social life (Cassells and Watt, 2002; Hogg and Godfrey, 2007).
seven - Design for living in later life
- Edited by Alan Walker, The University of Sheffield
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- Book:
- The New Science of Ageing
- Published by:
- Bristol University Press
- Published online:
- 04 March 2022
- Print publication:
- 29 August 2014, pp 209-240
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Summary
The need has never been greater for products, services and environments to be developed in such a way that they do not exclude, but instead reflect more accurately the diverse demands of today's users – particularly older and disabled people. (Professor Sir Christopher Frayling, Foreword, in Clarkson et al, 2003)
Introduction
Knowledge transfer is the starting point for this chapter, which has been crafted by members of six collaborative research teams who have been involved in unique projects concerning aspects of everyday living for older people, addressing issues of technology and design from a human perspective. A real dichotomy underpins this work, because while the focus has been on working with and learning from people in later life, all address issues that may affect people of all ages. So there is a real sense that while we may continue to highlight the underpinning ageism of designers, retailers and the youth-obsessed market, what we are really demonstrating is the importance of inclusive or universal design (Coleman, 1994) throughout the life course, or what has been called ‘transgenerational design’ (Pirkl, 1994). In recognising this we can see that this body of work from the New Dynamics of Ageing (NDA) Programme builds on the seminal research carried out for the i-design consortium funded by the Engineering and Physical Sciences Research Council (EPSRC) (2002–07) that brought together researchers in engineering and design (see Clarkson et al, 2003; Royal College of Art, 2012). It also recognises the dynamism of design outlined here by Fuad-Luke (2009, p xix):
The real JOY of design is to deliver fresh perspectives, improved well-being and an intuitive sense of balance with the wider world. The real SPIRIT of design elicits some higher meaning. The real POWER of design is that professionals and laypeople can co-design in amazingly creative ways. The real BEAUTY of design is its potential for secular, pluralistic expression. The real STRENGTH of design is this healthy variance of expression. The real RELEVANCE of design is its ability to be proactive. The real PASSION of design is in its philosophical, ethical and practical debate.
The NDA researchers also include a wide range of disciplines, bringing together social and medical scientists and the humanities alongside engineering and design colleagues.