Poetry, philosophy and dementia

2016 ◽  
Vol 11 (2) ◽  
pp. 75-80
Author(s):  
Ellen Jones ◽  
Tab Betts
Keyword(s):  
Family Relationships ◽  
Late Stage ◽  
Short Term Memory ◽  
Family Carers ◽  
Content Type ◽  
People With Dementia ◽  
Intrinsic Quality ◽  
The Uk ◽  
Person With Dementia ◽  
The Impact

Purpose – The purpose of this paper is to describe the use of poetry by family carers as a way into the inner world of a person with late stage dementia, consistent with their values, preferences and experiences; enhancing the wellbeing of both the person with dementia and family carers. Design/methodology/approach – The use of poetry is being increasingly recognised as valuable in improving wellbeing for people with dementia. Poetry has an intrinsic quality which is well-suited for people with dementia: it does not require following a storyline and therefore can be enjoyed by those with no short-term memory. Findings – The paper describes the benefits to both family members and the person with dementia; the use of poetry opened up expression of deep emotions, improved communication and enriched family relationships. Research limitations/implications – Use of poetry by family carers with people with late stage dementia is under researched in the UK and further study of the impact of this intervention would be beneficial. Practical implications – Poetry can be used practically in both small groups in care homes or community settings and also one to one by family carers. Of especial value are poems that have been learnt by heart when young. Originality/value – Finally, the paper also draws attention to the positive lessons we can learn from people with dementia.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

scholarly journals Health and social care access for adults with learning disabilities across the UK during the COVID-19 pandemic in 2020

2021 ◽  
Vol 26 (3) ◽  
pp. 174-179
Author(s):  
Samantha Flynn ◽  
Chris Hatton
Keyword(s):  
Learning Disabilities ◽  
Northern Ireland ◽  
Social Care ◽  
Family Carers ◽  
Content Type ◽  
Care Services ◽  
Health And Social Care ◽  
Adults With Learning Disabilities ◽  
The Uk ◽  
The Impact

Purpose This paper aims to present data about access to health and social care services during the COVID-19 pandemic for adults with learning disabilities across England, Northern Ireland, Scotland and Wales. Design/methodology/approach Data were collected directly from 621 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 378 adults with learning disabilities. The data were collected between December 2020 and February 2021 and concerned the use of health and social care services since the start of the first COVID-19 national lockdown in March 2020. Findings Access to and use of health and social care services significantly reduced for adults with learning disabilities across the UK during the COVID-19 pandemic between March 2020 and February 2021, with many people not receiving any services at all during that period. Similar patterns were seen across England, Northern Ireland, Scotland and Wales. However, data suggest some variations between countries for some services. Practical implications Future pandemic planning must ensure that access to these essential services is not completely lost for adults with learning disabilities and their family carers, as it was in some cases during the COVID-19 pandemic in 2020. Originality/value This is the largest study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. The authors primarily collected data directly from adults with learning disabilities, and worked with partner organisations of people with learning disabilities throughout the study.

scholarly journals Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e050066
Author(s):  
Emily West ◽  
Pushpa Nair ◽  
Yolanda Barrado-Martin ◽  
Kate R Walters ◽  
Nuriye Kupeli ◽  
...  
Keyword(s):  
Qualitative Interviews ◽  
Family Carers ◽  
Multiple Perspectives ◽  
Daily Lives ◽  
People With Dementia ◽  
Minority Ethnic Groups ◽  
Fear And Anxiety ◽  
The Uk ◽  
The Impact ◽  
Minority Ethnic

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

Dementia in the workplace: a review

2015 ◽  
Vol 14 (1) ◽  
pp. 24-34 ◽  
Author(s):  
Louise Ritchie ◽  
Pauline Banks ◽  
Michael Danson ◽  
Debbie Tolson ◽  
Fiona Borrowman
Keyword(s):  
Work Performance ◽  
Future Research ◽  
Allied Health Professionals ◽  
High Quality Research ◽  
Content Type ◽  
People With Dementia ◽  
Starting Point ◽  
State Pension ◽  
Person With Dementia ◽  
The Impact

Purpose – Recent changes affecting state pension age, and earlier diagnosis, will result in more people with dementia in employment. The purpose of this paper is to establish the nature of support that would enable/enables people with dementia or mild cognitive impairment to continue employment post diagnosis. Design/methodology/approach – An integrative review was carried out supported by information derived from a thematic analysis of data from interviews with seven relatives supporting a younger person with dementia and one person with dementia. Findings – Six papers were identified for inclusion in the review. Findings from the published papers and interviews indicated that work is a significant issue for people with dementia highlighting problems with job retention, work performance and the impact of diagnosis. Research limitations/implications – The review highlighted a dearth of high-quality research in the area. Although employment was not the main focus of the interviews, the extracts highlight some of the challenges that face people who develop dementia while of working age, their families, and employers. Practical implications – Vocational rehabilitation is primarily carried out by allied health professionals; however, there is a lack of research evidence relating to people with dementia in the workplace. Further research is needed in order to inform future practice. Social implications – Loss of employment deprives families of financial security and employers of a skilled employee. Originality/value – This is the first review to focus on dementia in employment, providing a starting point on which to base future research in this area.

Think outside: positive risk-taking with people living with dementia

2017 ◽  
Vol 21 (3) ◽  
pp. 157-166 ◽  
Author(s):  
Neil Mapes
Keyword(s):  
Risk Taking ◽  
Well Being ◽  
Social Emotional ◽  
Content Type ◽  
Outdoor Activities ◽  
People With Dementia ◽  
Wide Range ◽  
The Uk ◽  
The University ◽  
The Impact

Purpose The purpose of this paper is to share findings from the evaluation of dementia adventure (DA) holidays provided in 2016 and drawing on these data, to share reflections on positive risk-taking, which are inherent in outdoor activities, and consider the implications for research and practice with people with dementia. Design/methodology/approach Data are drawn from the 2016 internal evaluation report, using mixed methods design, of DA holidays independently reviewed by Dr Ruth Bartlett at the University of Southampton. Findings DA holidays are leading to a range of social, emotional and physical well-being outcomes, as well as wider benefits for the community of people with dementia, their family and carers. Practical implications Drawing on what positive risk-taking means for individuals, families and organisations, top ten considerations for positive risk taking outdoor activities are presented. Originality/value The number of organisations providing adventure experiences and holidays for people with dementia in the UK remains very low with just a handful of organisations. The impact and evaluation of these holidays is just emerging and whilst compelling needs replication, with larger sample sizes supported by clinical and scientific expertise to deepen our understanding of the impact of positive risk-taking outdoor activities. Additionally, there is a need for thinking and acting differently summarised by the phrase “THINK OUTSIDE” in developing a wide range of nature based positive risk-taking activities with people with dementia.

scholarly journals Spontaneous concerns about risk and abuse reported by people with dementia and their carers

2017 ◽  
Vol 19 (2) ◽  
pp. 92-99 ◽  
Author(s):  
Susan M. Benbow ◽  
Paul Kingston
Keyword(s):  
Secondary Analysis ◽  
Driving Safety ◽  
Care Practice ◽  
Family Carers ◽  
Content Type ◽  
People With Dementia ◽  
Health And Social Care ◽  
Wide Range ◽  
The Impact ◽  
Practical Implications

Purpose The purpose of this paper is to look at concerns about risk/abuse expressed spontaneously by people with dementia (PwD) and their carers in narratives describing their journeys with dementia. Design/methodology/approach A total of 35 narratives were elicited from PwD, carers of PwD and couples where one partner was living with dementia as part of a study on the impact of producing narratives on PwD and their carers. Participants were found to allude to risk/abuse, or specifically mention thoughts on risk and abuse in their narratives. A secondary analysis of the theme of risk/abuse is reported here. Findings Concerns about risk/exploitation were often expressed in the narratives, and covered a range of areas including driving, safety in the home, safety outdoors, falls, finances, risk to PwD from others, risk to others from PwD, potential or actual police incidents and neglect. Research limitations/implications The narratives were elicited as part of another project and participants were not asked directly about risk; themes reported here were brought up spontaneously by participants. Practical implications In relation to dementia a wide range of risk/abuse issues is of concern to PwD and their carers, including driving and financial vulnerabilities. PwD and carers are prepared to talk about risk/abuse when given an opportunity. It is important to investigate and understand experiences and concerns about risk/abuse if they are to be addressed in health and social care practice. Originality/value The narratives offer unique insights into the concerns of PwD and family carers.

scholarly journals ‘Four walls and a garden’: Exploring the experiences of families affected by dementia during the COVID-19 pandemic

Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening
Keyword(s):  
Qualitative Study ◽  
Peer Support ◽  
Family Carers ◽  
Social Disruption ◽  
Structured Interviews ◽  
Social Contacts ◽  
Social Division ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Introduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: ‘busy life before lockdown’; Isolation: ‘ four walls and a garden’; Living with restrictions: ‘ treading on eggshells’; Discovering positives: ‘you are in the same boat’; Easing lockdown: ‘ raring to go’; Heightened uncertainty: ‘ things have changed’. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

scholarly journals Personality and Dementia: an Approach to Differential Profile of the Caregiver

2011 ◽  
Vol 1 (3) ◽  
pp. 85-94
Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros
Keyword(s):  
Relevant Information ◽  
Personality Profile ◽  
Family Carers ◽  
Psychological Variables ◽  
People With Dementia ◽  
The Family ◽  
Study Population ◽  
The One ◽  
The Impact

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.

scholarly journals Places Visited, Maintained, or Abandoned Outside Home: A Community Mobility Need of Older Adults With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 673-673
Author(s):  
Isabel Margot-Cattin ◽  
Sophie Gaber ◽  
Nicolas Kuhne ◽  
Camilla Malinowski ◽  
Louise Nygard
Keyword(s):  
Older Adults ◽  
Cognitive Decline ◽  
Health Condition ◽  
Driving Cessation ◽  
Age In Place ◽  
Community Mobility ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Abstract For older adults to “age in place”, they need to keep engaged and mobile in their communities, whatever their health condition. The impact of age and cognitive decline on community mobility is a growing problem in Europe and worldwide. Engaging in occupations outside home implies being able to get to those places where activities are performed. Yet little is known regarding the types of places visited, maintained or abandoned for older adults with/without dementia. This study addresses community mobility needs through the places people visit, maintain or abandon. People with and without dementia, aged 55+, were interviewed using the Participation in ACTivities and Places OUTside the Home (ACT-OUT) questionnaire across Switzerland (n=70), Sweden (n=69) and the UK (n=128). Results show that people with dementia experience a higher rate of abandonment for more places than regular older adults. Insights about driving cessation and access to travel passes will be presented.

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