Supporting carers today: progress review

Carers action plan 2018 to 2020: 1-year progress review | Department of Health & Social Care

This document  highlights the progress that has been made in delivering the carers action plan 2018 to 2020 to increase support for carers. The cross-government action plan was published in June 2018.

Over the year since publication, positive progress has been made towards fulfilling the commitments set out in the Action Plan. This report highlights this progress, categorised under the following themes:

  • services and systems that work for carers;
  • employment and financial wellbeing;
  • supporting young carers;
  • recognising and supporting carers in the wider community and society;
  • building research and evidence to improve outcomes for carers.

Full report: Carers action plan 2018 to 2020: 1-year progress review

What motivates people to care for someone with dementia?

This review looks to identify and describe informal carers’ motivations for caring for people living with dementia, including their motivations at the start of caring and motivations for continuing to care.  The authors also, where possible, aimed to qualitatively identify and describe any similarities or differences in motivations amongst different demographic groups e.g. in terms of gender and relationships (e.g. spouse versus adult child) and ethnic or cultural groups | BMC Geriatrics

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Background
Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia.

Methods
The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative.

Results
Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation.

Conclusions
Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.

Full article: Nan Greenwood and Raymond Smith | Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature | BMC Geriatrics | 2019 | 19:169 | published 17 June 2019

Teaching happiness to dementia caregivers reduces their depression, anxiety

Moskowitz, J. T  et al. | Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers | Health Psychology, 2019 | Vol. 38 (5): p391 – 402

Caring for family members with dementia causes significant emotional and physical stress that increases caregivers’ risk of depression, anxiety and death. A new method of coping with that stress by teaching people how to focus on positive emotions reduced their anxiety and depression after six weeks. It also resulted in better self-reported physical health and positive attitudes toward caregiving.

The intervention included teaching participants eight skills that increase positive emotions. The skills taught were:

1. Recognizing a positive event each day

2. Savoring that positive event and logging it in a journal or telling someone about it

3. Starting a daily gratitude journal

4. Listing a personal strength each day and noting how you used this strength recently

5. Setting an attainable goal each day and noting your progress

6. Reporting a relatively minor stressor each day, then listing ways in which the event can be positively reappraised or reframed

7. Understanding small acts of kindness can have a big impact on positive emotion and practicing a small act of kindness each day

8. Practicing mindfulness through paying attention to daily experiences and with a daily 10-minute breathing exercise, concentrating on the breath

Full story at ScienceDaily 

Full abstract at Health Psychology

Living with a partner with dementia

Barbara Egilstrod et al | Living with a partner with dementia: a systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives |Aging & Mental Health | 2019 Vol.23:5, p541-550

Objectives: Dementia causes dramatic changes in everyday-living for spouses. Occured changes in marital relationship, force spouses to perform more both mentally and physically. Leading to a spousal perceived burden. To improve understanding of spouses’ needs, spouses lived experiences is needed. The aim was to identify and synthesise qualitative studies on spouses’ lived experiences of living with a partner with dementia.

Methods: A systematic search was undertaken in January 2017. Six databases (CINAHL, Cochrane Library, Embase, PubMed, PsycINFO and Sociological Abstracts) were searched, using search terms in accordance with PICo. A descriptive synthesis and a thematic synthesis were undertaken.

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Findings: Fifteen studies met the inclusion criteria. Three themes derived from the analysis 1) Noticing changes in everyday life 2) Transformation to a new marital relation in everyday life, with corresponding sub-themes; changes in marital relationship, management of the transitioned marital relation in everyday life 3) Planning the future.

Conclusion: Findings provide an overview of how spouses notice changes and transform their marital relationships in everyday-life. Findings offer a deeper understanding of changes that occurs over time while the partner is living at home. Findings contribute with knowledge on spouses’ experiences of changes in early-stages of dementia. Interventions supporting spouses are needed.

Full document available here

Factors influencing the transition experience of carers for persons with dementia, when the person with dementia moves into residential care

Beth Pritty, Danielle De Boos & Nima Moghaddam | Factors influencing the transition experience of carers for persons with dementia, when the person with dementia moves into residential care: systematic review and meta-synthesis | Aging & Mental Health | 2019 | published online 12 April 2019

Abstract
Aims: To understand factors influencing the experience of carers for people with dementia, when that person moves from living in the community to living in residential care. Specifically, we aimed to identify facilitators and inhibitors of carer adjustment during this transition.

Method: A systematic search of CINAHL, EMBASE, PubMed, and PsycINFO databases was conducted. Nine qualitative articles published between 2001 and 2017, based on the experiences of 141 carers, were included. Thematic analysis was applied to the data, with the concepts of transition inhibitors and facilitators being used to structure the analytic process.

Results: Analysis produced five themes, representing factors that could affect carer experiences of the focal transition-process: modifying the difficulty of this process according to their presence or absence. The themes were (1) Connection, pertaining to the carer feeling connected to the person with dementia and professionals during this transition; (2) Informed & Informing, relating to exchange of information between the carer and facility staff or health professionals; (3) The facility: welcoming & skilful, dealing with carer perceptions of the facility and their confidence in the staff; (4) It’s What You Make of It, discussing the meaning the carer made of the admission and the impact this had; and (5) Sharing Responsibility, addressing how carers were affected by the perceived sharing of responsibility for care-provision.

Conclusions: A supportive network has a significant role to play in facilitating this transition for carers. However, further research into what carers would find useful during this time is needed.

Full detail at Aging & Mental Health

Specialist nursing support for unpaid carers of people with dementia

Having contact with a nurse who understands dementia and has the time to get to know their situation could improve carers’ confidence and help them to feel supported | National Institute for Health Research | University of York

Admiral Nursing is the only nursing service that specifically focuses on supporting carers of people with dementia in the UK. Research carried out by the University of York found that Admiral Nurses are successfully targeting carers with the most complex needs

The research team, from York’s Social Policy Research Unit and Centre for Health Economics, looked at information routinely collected by Dementia UK which showed that, on average, the needs of carers with an Admiral Nurse reduced over time. However, the data were not detailed enough to show what caused this improvement. In interviews and focus groups, carers themselves said that the sorts of support provided by Admiral Nurses could positively influence their health, quality of life and confidence in caring.

The research team followed this up with a survey, completed by 346 current carers of people with dementia, which demonstrated the heavy burden that dementia carers carry, the low levels of support that they get from health and social care services and the financial impact on carers and their families when they have to pay for help.

Full report: Gridley K, et al. |Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study | Health Service Delivery Research 2019;7(12).

A treatment for sleep disorders in dementia?

This paper investigates the feasibility and acceptability of a six-session non-pharmacological therapy for people with dementia who have disturbed sleep.  The authors conclude that the ‘DREAMS-START’ intervention for sleep disorders in dementia is both feasible and acceptable | International Psychogeriatrics | via The Mental Elf

In people with dementia, symptoms such as agitation and inappropriate behaviour are fairly well known for being difficult to cope with. What is less well known is that people with dementia often sleep badly. They may wander, putting themselves at risk, and being awake at night then tends to make them sleepy during the day. This sleep disruption can cause a lot of stress for their carers.

Available treatments for this problem do not appear to be very effective. The current study tests a new intervention called DREAMS-START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), which is delivered to carers over six sessions to help them cope with and improve sleep problems.

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Abstract

Background:40% of people with dementia have disturbed sleep but there are currently no known effective treatments. Studies of sleep hygiene and light therapy have not been powered to indicate feasibility and acceptability and have shown 40–50% retention. We tested the feasibility and acceptability of a six-session manualized evidence-based non-pharmacological therapy; Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS-START) for sleep disturbance in people with dementia.

Methods:

We conducted a parallel, two-armed, single-blind randomized trial and randomized 2:1 to intervention: Treatment as Usual. Eligible participants had dementia and sleep disturbances and a family carer and were recruited from two London memory services and Join Dementia Research. Participants wore an actiwatch for two weeks pre-randomization. Trained, clinically supervised psychology graduates delivered DREAMS-START to carers randomized to intervention; covering Understanding sleep and dementia; Making a plan (incorporating actiwatch information, light exposure using a light box); Daytime activity and routine; Difficult night-time behaviors; Taking care of your own (carer’s) sleep; and What works? Strategies for the future. Carers kept their manual, light box, and relaxation recordings post-intervention. Outcome assessment was masked to allocation. The co-primary outcomes were feasibility and acceptability.

Results:

In total, 63 out of 95 eligible referrals consented  62 were randomized, and 37 out of 42  adhered to the intervention.

Conclusions:

Research: More than 600 people quit work to look after older and disabled relatives every day

Carers UK | February 2019 | Research: More than 600 people quit work to look after older and disabled relatives every day

Research released by Carers UK reveals that 2.6 million people have quit their job to care for a loved one who is older, disabled or seriously ill, with nearly half a million (468,000) leaving their job in the last two years alone – a figure that equates to more than 600 people every day.  Carers UK report that this is a 12 per cent increase since Carers UK and YouGov polled the public in 2013.

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The findings also show that more people are caring than previously thought, with almost 5 million workers now juggling their paid job with caring – a dramatic rise compared with Census 2011 figures of 3 million.

  • 1 in 7 of the UK workforce caring for a loved one
  • 6 million have quit their job to care
  • Carers UK calls for better employment rights including five to 10 days paid care leave (Source: Carers UK)

Carers UK Research: More than 600 people quit work to look after older and disabled relatives every day

In the news:

BBC News Carers quitting jobs from pressure

Yorkshire Post More than 600 carers a day are being forced to quit work to look after loved ones

Sky News Hundreds forced to quit paid work every day to look after relatives

 

Supporting carers: guidance and case studies

Local Government Association | December 2018 |  Supporting carers: guidance and case studies

6.5 million people in the UK are classed as carers, a figure equivalent to 10 per cent of the population.  This includes the more than 3 million carers between the ages of 50 and 64 (2 million) and 65+ (1.3 million). As well as approximately 166,000 under 18s with caring
responsibilities in England currently. The majority of carers (approximately 40 per cent), care for their parents or parents-in-law, while over a quarter look after their spouse or partner. Caring for disabled children, both adult and under 18, accounts for 1 in 7 cases.

The care that is provided by carers is worth an estimated £132 billion, about the same amount that is spent on the NHS in England.

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Key statistics

  • 1 in 10 people are carers
  • 40 per cent increase in carers predicted over next 20 years
  • £132 billion worth of care provided by carers
  • 1 in 5 carers are aged over 65
  • 1.4 million carers provide over 50 hours of care a week
  • 7 in 10 have suffered mental ill health and 6 in 10 physical ill health from caring
  • 166,363 young carers in England – a fifth higher than a decade previously
  • 1 in 12 young carers is caring for more than 15 hours a week
  • 1 in 20 misses school because of their caring responsibilities
  • young carers are 1.5 times more likely to have a long-term illness, special educational needs or a disability
  • there are 670,000 unpaid carers of people with dementia in the UK
  • two thirds of people with dementia live at home and most are supported by unpaid carers.

The pressures of being a carer can place a burden on physical and mental health. Carers
are more likely to suffer depression, anxiety and stress and nearly two-thirds of carers
have a long-standing health condition.

Supporting carers: guidance and case studies, a publication from Local Government Association highlights current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.

The publication includes a case study from Carers Leeds (Source: Local Government Association).