Service-related needs of older people with dementia: perspectives of service users and their unpaid carers

2013 ◽  
Vol 25 (7) ◽  
pp. 1107-1114 ◽  
Author(s):  
Sylwia Górska ◽  
Kirsty Forsyth ◽  
Linda Irvine ◽  
Donald Maciver ◽  
Susan Prior ◽  
...  
Keyword(s):  
Older People ◽  
Lived Experience ◽  
Service Provision ◽  
Social Engagement ◽  
Diagnostic Procedures ◽  
Political Agenda ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Impact ◽  
Diagnostic Support

ABSTRACTBackground: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples’ lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs.Method: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers.Results: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement.Conclusion: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

scholarly journals 211 - Changes to post-diagnostic dementia support in England and Wales during the COVID-19 pandemic

2021 ◽  
Vol 33 (S1) ◽  
pp. 13-13
Author(s):  
Alison Wheatley ◽  
Marie Poole ◽  
Louise Robinson
Keyword(s):  
Social Care ◽  
Third Sector ◽  
Full Time ◽  
England And Wales ◽  
Team Meetings ◽  
Use Of Technology ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Impact ◽  
Diagnostic Support

Background:The COVID-19 pandemic precipitated widespread change across health and social care in England and Wales. A series of lockdowns and UK Government guidance designed to reduce the spread of COVID-19 which emphasised social distancing and increased use of personal protective equipment led to changes such as increased use of remote consultation technologies and the closure of services deemed non-essential. This included many services for people with dementia and their families, such as day centres and dementia cafes.Objective:To explore the changes made to services during the pandemic and the impact of these changes on the delivery of good post-diagnostic dementia support.Method:Professionals who had previously been recruited to the ongoing PriDem qualitative study were approached for follow up interview. Eighteen interviews with a total of 21 professionals working in health, social care and the third sector were conducted using telephone or video conferencing.Interviews were audio recorded, transcribed and checked prior to thematic analysis.Results:Key themes emerging from preliminary analysis of the data include: uncertainty about the future and the need to adapt quickly to shifting guidance; changing job roles and ways of working; the emotional and physical impact of the pandemic on staff working with people with dementia and their families; and the impact of changes made (e.g. increased PPE, remote working) on the ability to deliver post-diagnostic support. However, there were also some unintended positive outcomes of the changes. These included the ability to include family members living at a distance in remote consultations, allowing for more robust history-taking, as well as the uptake of technology to facilitate cross-sector and multidisciplinary working between professionals.Conclusion:Delivering post-diagnostic dementia support during COVID-19 was challenging and forced dementia services to make adaptations. Participants expected that some of these changes would be incorporated into post-pandemic work, for example increased use of technology for multidisciplinary team meetings or blended approaches to patient-facing services involving both virtual and face to face work as appropriate. However, most participants agreed that it was not appropriate nor desirable to provide fully remote post-diagnostic support on a full time basis.

Sexuality, aging, and dementia

2012 ◽  
Vol 24 (7) ◽  
pp. 1026-1033 ◽  
Author(s):  
Susan Mary Benbow ◽  
Derek Beeston
Keyword(s):  
Older People ◽  
Sexual Behaviors ◽  
Ethical Decision Making ◽  
Current Knowledge ◽  
Group Living ◽  
Later Life ◽  
People With Dementia ◽  
Health And Social Care ◽  
Centered Care ◽  
The Impact

ABSTRACTBackground:Sexuality in later life and its relationship to dementia is a neglected topic: greater understanding of the area has the potential to contribute to the quality of life of people with dementia, their family members, and formal carers. We review current knowledge about sexuality, aging, and dementia.Methods:We undertook a review of the recent literature to examine of the following areas: what is known about sexuality and aging, and about attitudes to sexuality and aging; what is known about the relevance of sexuality and aging to people living with dementia and their care; and the management of sexual behaviors causing concern to others.Results:Sexual activity decreases in frequency with increasing age but many older people remain sexually active; there is no age limit to sexual responsiveness; and sexuality is becoming more important to successive cohorts of older people, including people living with dementia and gay, lesbian, bisexual, and transgendered elderly people. Attitudes and beliefs toward sexuality and aging are strongly influenced by stereotypes and myths, not only among the general public but also among those working in health and social care.Conclusions:Professional bodies should include sexuality, aging, and dementia in their training curricula. More work is needed on the impact of environmental issues, particularly in group living situations, on older adults’ sexuality, and on consent issues. Ethical decision-making frameworks can be useful in practice. Organizations should investigate how to support staff in avoiding a problem-orientated approach and focus on providing holistic person-centered care.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Primary Reason ◽  
People With Dementia ◽  
High Level ◽  
The Impact ◽  
The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

Is co-production working well in recovery colleges? Emergent themes from a systematic narrative review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Karen Louise Bester ◽  
Anne McGlade ◽  
Eithne Darragh
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Social Care ◽  
The Body ◽  
Bibliographic Databases ◽  
Service Users ◽  
Content Type ◽  
Practitioner Attitudes ◽  
Health And Social Care ◽  
The Impact

Purpose “Co-production” is a process in health and social care wherein service users and practitioners work in partnership. Recovery colleges (RCs) are educational establishments offering mental health education; a cornerstone feature is that courses are designed and delivered in parity by both mental health practitioners and “peers” – people with lived experience of mental illness. This paper aims to consider, through the identification of key themes, whether co-production within RCs is operating successfully. Design/methodology/approach The paper is a systematic review of qualitative literature. Relevant concept groups were systematically searched using three bibliographic databases: Medline, Social Care Online and Scopus. Articles were quality appraised and then synthesised through inductive thematic analysis and emergent trends identified. Findings Synthesis identified three key themes relating to the impact of co-production in RCs: practitioner attitudes, power dynamics between practitioners and service users, and RCs’ relationships with their host organisations. As a result of RC engagement, traditional practitioner/patient hierarchies were found to be eroding. Practitioners felt they were more person-centred. RCs can model good co-productive practices to their host organisations. The review concluded, with some caveats, that RC co-production was of high fidelity. Originality/value RC research is growing, but the body of evidence remains relatively small. Most of what exists examine the impact of RCs on individuals’ overall recovery and mental health; there is a limited empirical investigation into whether their flagship feature of parity between peers and practitioners is genuine.

scholarly journals Does the advice requested by carers of people who live with dementia reflect the level of commissioned post-diagnostic support? A retrospective evaluation of calls to the Me2U dementia day centre 24-hour advice line

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S337-S337
Author(s):  
Rajan Nathan ◽  
Stephen Callaghan ◽  
Kelly Walker ◽  
Angela Mason ◽  
Rosemarie Whittington
Keyword(s):  
Social Care ◽  
Social Issues ◽  
Urgent Care ◽  
Retrospective Evaluation ◽  
Common Time ◽  
Health And Social Care ◽  
The Mean ◽  
Unplanned Admissions ◽  
The Impact ◽  
Diagnostic Support

AimsThe aim was to examine the reasons for advice requests by carers of people who live with dementia (PLWD) that attend the Me2u dementia day centre in order to identify key explanatory themes. We hypothesised that requests were related mainly to coordinating care and clinical issues due to limited post-diagnostic support (PDS) in our area.BackgroundThe Me2u dementia day centre (Merseyside) cares for PLWD and also supports carers. As part of the service, a 24-hour advice line is included for PLWD and their carers who attend the centre. Locally, there is limited PDS and most carers navigate the health and social care system alone mirroring the findings by the National Collaborating Centre for Mental Health (NCCMH).MethodWe undertook a retrospective evaluation of 244 advice calls, from 64 carers, between 01/06/2019 and 31/12/2019. We analysed time of call, type of advice, type of dementia, age and whether the advice was for the PLWD or for the carer.ResultOf the 244 calls, the most common time to call was between 09.00 - 14.00 (n = 168; (68.8%) peak 09.00 - 10.00 (n = 38). Average age of the person about whom the advice was sought was 79.08 years. 91.4% of the advice calls related to PLWD (most common dementia Alzheimer's) and 8.6% to the carer only. The mean number of calls per person was 3.8 (range 1–24).Advice data were grouped into 9 broad themes namely, related to symptoms/behaviour (32.79%, n = 80), request for Me2u to coordinate care (20.08%, n = 49), general advice (14.75%, n = 36), personal care (9.42%, n = 23), carer only advice (8.60%, n = 21), social issues (6.14%, n = 15), social care (4.50%, n = 11), safeguarding (2.46%, n = 6), non-health and social care issue (1.23%, n = 3).ConclusionReasons for limited/poor PDS given by the NCCMH are; absence of named coordinators of care, over-reliance on families and carers to manage and facilitate appointments, poor recognition and management of comorbidities. This data show that 52.87% of calls were for clinical advice and coordination of care reflecting NCCMH findings. The interventions post-call reduced the impact on providers of urgent care.These findings provide support for the provision of a [24-hour] advice line as a routine part of post-diagnostic support services, especially in areas that have limited or poor PDS. Commissioners of PDS services in areas that have limited or poor PDS should make this a priority to prevent unplanned admissions to hospital and carer breakdown.

Maintaining independence in older people

2010 ◽  
Vol 20 (2) ◽  
pp. 128-153 ◽  
Author(s):  
AD Beswick ◽  
R Gooberman-Hill ◽  
A Smith ◽  
V Wylde ◽  
S Ebrahim
Keyword(s):  
Older People ◽  
Social Engagement ◽  
Hospital Admissions ◽  
Meta Analysis ◽  
Functional Decline ◽  
Complex Interventions ◽  
Preventive Strategies ◽  
Health And Social Care ◽  
Quality Trial ◽  
High Quality Trial

SummaryAppropriate social and medical interventions may help maintain independence in older people. Determinants of functional decline, disability and reduced independence are recognized and specific interventions target the treatment of clinical conditions, multiple health problems and geriatric conditions, prevention of falls and fractures, and maintenance of physical and cognitive function and social engagement.Preventive strategies to identify and treat diverse unmet needs of older people have been researched extensively. We reviewed systematically recent randomized controlled trials evaluating these ‘complex’ interventions and incorporated the findings of 21 studies into an established meta-analysis that included 108,838 people in 110 trials. There was an overall benefit of complex interventions in helping older people to live at home, explained by reduced nursing home admissions rather than death rates. Hospital admissions and falls were also reduced in intervention groups. Benefits were largely restricted to earlier studies, perhaps reflecting general improvements in health and social care for older people. The wealth of high-quality trial evidence endorses the value of preventive strategies to help maintain independence in older people.

scholarly journals There's no apprenticeship for Alzheimer's: the caring relationship when an older person experiencing dementia falls

2011 ◽  
Vol 32 (5) ◽  
pp. 873-896 ◽  
Author(s):  
ANNE MCINTYRE ◽  
FRANCES REYNOLDS
Keyword(s):  
Older People ◽  
Interpretative Phenomenological Analysis ◽  
Care Recipient ◽  
Term Care ◽  
Everyday Activity ◽  
Carer Burden ◽  
People With Dementia ◽  
Caring Relationship ◽  
Serious Injury ◽  
The Impact

ABSTRACTOlder people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

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