Worst hit: dementia during coronavirus #covid19rftlks

Alzheimer’s Society| September 2020| Worst hit: dementia during coronavirus

A new report from the Alzheimer’s Society spotlights the impact of the pandemic on family and friends caring for a loved one with dementia. Worst hit: dementia during coronavirus reveals that 92 million extra hours of care have been given in response to what the report terms, the ‘double whammy of lockdown making dementia symptoms worse, and the chronically underfunded social care system leaving them nowhere else to turn.’

Almost half (45%) of those caregivers surveyed by the charity, felt the level of care their loved one with dementia needed was more than they could give. Half of carers have spent more than 100 hours a week looking after or helping the person they care for since 23 March.

Image is a poster taken from the publication, it states key statistics from the report

Alzheimer’s Society Worst hit: dementia during coronavirus

Alzheimer’s Society press release ‘Exhausted’ family and friends spent 92 million extra hours caring for loved ones with dementia since lockdown

A Systematic Review of Mindfulness-Based Interventions for Patients with Mild Cognitive Impairment or Dementia and Caregivers

Shim M, Tilley J.L., Im, S., Price, K., & Gonzalez, A. (2020) A Systematic Review of Mindfulness-Based Interventions for Patients with Mild Cognitive Impairment or Dementia and Caregivers| Journal of Geriatric Psychiatry and Neurology| doi:10.1177/0891988720957104

New research has analysed the evidence base for mindfulness interventions for patients with dementia, mild cognitive impairment and their carers. It has been published in the Journal of Geriatric Psychiatry and Neurology

Abstract

The aim of this article was to systematically review the quality and efficacy of the current evidence for mindfulness-based interventions (MBIs) in patients with mild cognitive impairment (MCI), patients with dementia (PwD), and their caregivers. We identified 20 randomized controlled trials (RCTs) (11 for patients, 9 for caregivers) published in the last 15 years. Evidence suggested that MBIs are highly acceptable and credible treatments for patients with MCI, PwD and caregivers. Specifically, for PwD, the results indicated that the magnitude of post-treatment effects of MBIs are in the medium to large range for psychosocial outcomes, and in the small to medium range for cognitive functioning; however, treatment effects on dementia biomarkers were mixed, ranging from small to large, depending on the outcome measure. Findings also evidenced salutary effects of MBIs for caregivers of PwD, with post-treatment effects ranging from medium to large for caregiver stress and burden and large effects for quality of life, and mixed outcomes for cognitive functioning, with effects in the small to large range. However, confidence in these findings is relatively limited due to methodological limitations, especially in terms of poor consistency in intervention strategies, outcome measures, and other key criteria across studies. To better assess the value of MBIs for these populations and optimize treatment outcomes, we recommend further research with improved study methodology (e.g., multi-method assessment, universal criterion and outcome measures, use of active control groups, larger sample sizes, long-term follow-up) to replicate current findings and enhance our understanding of underlying treatment mechanisms of MBIs.

NHS in Rotherham can request the article from the Library & Knowledge Service

Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: A randomized clinical trial

Pui Kin Kor, P. Justina Yat Wah Liu, J. & Tong Chien, W. (2020) |Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: A randomized clinical trial| The Gerentologist | https://doi.org/10.1093/geront/gnaa125

The latest issue of The Gerentologist features a study that examined the impact of MBCT for caregivers of people with dementia, the authors of the study report that the MBCT reduce the caregivers’ stress and promote their psychological well-being over 6-month follow-up.

Abstract

Background and Objectives

Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving

Research Design and Methods

113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT over 10 weeks with telephone follow-up; or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome), and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia(BPSD) in the care-recipients were assessed and compared at baseline (T0), post-intervention (T1), and at the 6-month follow-up (T2)

Results

At both T1 and T2, the intervention group had a statistically greater improvement in stress, depression, anxiety and BPSD-related caregivers’ distress. A significant greater improvement was also demonstrated in mental health-related QoL at T2 and BPSD of the care-recipients at T1. The increased caregivers’ level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with correlation coefficient -0.64 to 0.43

Discussion and Implications

The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers’ stress and promote their psychological well-being over 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioural outcomes of both caregivers and care-recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving (Source: The Gerentologist)

This article can be requested by Rotherham NHS staff here

Updated Coronavirus information for families looking after someone with dementia

Dementia UK are constantly updating the coronavirus hub on their website. Visit it to read the latest advice from dementia specialist Admiral Nurses, including the list of frequently asked questions coming through to the Dementia UK Helpline.

Coronavirus: advice for families looking after someone with dementia
The current government advice is for everyone over age 70 or with other health conditions to stay at home for up to 16 weeks. This does not specifically include people with dementia; but if the person you care for has other health considerations, or is in any way vulnerable, you might decide to follow this advice.  Full detail here

Coronavirus: questions and answers
Dementia UK have put together a list of commonly asked questions totheir Helpline, which will be updated as and when the situation develops. Full detail here

Leaflets and information
Information, blogs and ideas for people living with dementia during this time. Full detail here

Supporting adult carers

Supporting adult carers | NICE guideline [NG150] | Published January 2020

This guideline covers support for adults (aged 18 and over) who provide unpaid care for anyone aged 16 or over with health or social care needs. It aims to improve the lives of carers by helping health and social care practitioners identify people who are caring for someone and give them the right information and support. It covers carers’ assessments, practical, emotional and social support and training, and support for carers providing end of life care.

This guideline covers general principles that apply to all adult carers. Recommendations about supporting carers of people with specific health needs can be found in NICE guidance on those conditions.

This guideline includes recommendations on:

See also:  NICE interactive flowchart – Supporting adult carers

Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden

Allen, A. P. et al. | Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden| Age and Ageing | Volume 49, Issue 1, January 2020 | Pages 52–56

Abstract
Objectives
The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden.

Methods
In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients’ age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen.

Results
At baseline, patients’ age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up.

Conclusions
Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.

Dementia care costs to nearly treble in next two decades

This report, commissioned by Alzheimer’s Society, provides projections of the number of older people (aged 65 and over) living with dementia and the costs of health care, social care and unpaid care for older people living with dementia from 2019 to 2040 in the UK | story via London School of Economics and Political Science 

The cost of social care for people living with dementia will nearly treble by 2040, according to a new report by the Care Policy and Evaluation Centre (CPEC).

The research shows that by 2040, while the number of people living with dementia in the UK is expected to nearly double (to 1.6 million), the cost of social care is expected to almost triple, increasing from £15.7 to £45.4 billion. It falls to people living with dementia and their families to pay the majority of these costs.

cpec
Image source: http://www.lse.ac.uk/

 

The study also estimates that families are providing £13.9 billion a year in unpaid care for people living with dementia. This is also projected to increase to £35.7 billion by 2040.

The total cost of dementia to the UK economy has risen to £34.7 billion and will continue to rise to £94.1 billion by 2040. This includes costs to the NHS, paid social care and unpaid care.

 
Full research paper: Projections of Older People Living with Dementia and Costs of Dementia Care in the United Kingdom, 2019–2040 | CPEC Working Paper 5 | Raphael Wittenberg, Bo Hu, Luis Barraza-Araiza, Amritpal Rehill

See also: Dementia care costs to nearly treble in next two decades | London School of Economics and Political Science

Monthly phone check-in may mean less depression for families of patients with dementia

A monthly, 40-minute phone call from a non-clinical professional may suppress or reverse the trajectory of depression so frequently experienced by family members caring for patients with dementia at home, according to a new study | story via ScienceDaily

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A number of studies have pointed to the high incidence of depression in caregivers of patients with dementia This study, published in JAMA found that a simple, relatively inexpensive intervention, with a “care team navigator” operating on the frontline with support from clinicians, may improve the wellbeing of caregivers whose role may be crucial to the patient’s survival and quality of life.

Researchers tracked quality of life and depression for 12 months in 780 patient-plus-caregiver pairs, of whom 86 percent were the spouse or daughter. These pairs included 512 caregivers in the intervention group and 268 caregivers in the “usual care” control group, in which support was limited to a standard list of resources and services and a quarterly newsletter.

The researchers found a drop from 13.4 percent to 7.9 percent in the number of caregivers with moderate-to-severe depression in the intervention group over the course of the year, versus an upswing from 8 percent to 11.1 percent in the number of caregivers with moderate-to-severe depression in the usual care cohort.

Full story at ScienceDaily

Full research: Possin KL et al. | Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial |  JAMA Internal Medicine. Published online September 30, 2019

Respite Care for People with Dementia and their Carers

Emma O’Shea et al. | Respite Care for People with Dementia and their Carers: A Qualitative Study with Multiple Stakeholders | Age and Ageing | Volume 48, Issue Supplement 3 | September 2019 | Pages iii17–iii65

Background

Traditional models of respite, particularly those based within residential care settings, may not always be effective, and there is evidence of low acceptability for some people with dementia and carers. The aim of this study was to synthesise multiple stakeholders’ experiences of respite services for dementia and their perspectives on respite service development.

Methods

Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n=6), carers (n=9), front-line staff (n=7), managers (n=8), policy-makers/academics (n=5). Data were interpreted inductively using thematic analysis, with a focus on latent patterns of meaning.

Results

Three salient themes were identified (‘Phases of Transition’, ‘Person-centred Respite Care’; and ‘Recalibrating Respite’). Three distinct phases of respite transitions for people with dementia and carers are discussed. Respite services that actively support transitions through empathic communication regarding clients’ concerns, support needs and preferences are highly valued. Clients described care resembling a ‘person-centred’ approach as their ideal, without using that term, but people with dementia do not always experience this type of care. The majority of providers indicated that they provide ‘person-centred care’, but many demonstrated a poor understanding of the concept; many of these providers have a biomedical view of dementia and the personhood status of people with dementia. Regarding service development, clients would prefer more choice, flexibility and responsiveness, including a shift away from residential provision towards an integrated continuum of personalised, strengths-focused community-based and in-home supports.

Conclusion

Any recalibration of respite towards a home/community focus will require a transformation in how dementia is constructed by society, as well as a significant financial investment. Other implementation considerations include: staffing and staff competency; and the co-ordination, integration and regulation of personalised, home-based care models. Finally, it may be necessary to replace the outdated term ‘respite’ with an alternative nomenclature that is not discordant with person-centred care principles.

Benefits of attending a ‘Dementia First Aid’ course for family caregivers of people with early dementia

Study results suggest that the dementia first aid course is effective in changing the knowledge and attitude of dementia caregivers. It is hoped that this will also enhance their ability and skills of caring, which may in turn reduce caregivers’ sense of burden and wellbeing | British Journal of Medical Practitioners

Abstract
Objective: Pilot evaluation of the impact of a ‘Dementia First Aid’ (DFA) training course on the knowledge and attitude of family caregivers of people with early dementia.

Methods: The participants in the study were primary family caregivers of people with dementia residing in northwest Hertfordshire. The 4-hour ‘Dementia First Aid’ course was delivered by NHS professionals. The training was organised once every second month from November 2015 till March 2017. The course provided overview of dementia and its impact on the person and their families, mindfulness based stress reduction, and the dementia first aid action plan for crises. The participants were asked to complete the Alzheimer’s disease Knowledge Scale (ADKS) before and after the completion of the course & complete carer burden scale (Zarit Burden Scale). Participants were asked to complete the scales after six months.

Results: The study sample comprised 65 people who had completed the DFA course. All completed pre- and post-training measures (ADK and Zarit burden scale), and a further 34 provided follow-up data approximately 6 months later. The scores were compared using a correlated group t-test. ADK scores improved significantly immediately after attending the course. For the subgroup that completed data at 6 months, the improvement in scores was sustained.

Conclusions: This ‘Dementia First Aid’ course appears to be effective in improving family caregiver’s knowledge of dementia and this knowledge was sustained at 6 months follow up.

Full article: Rahul Tomar et al. | Benefits of attending a ‘Dementia First Aid’ course for family caregivers of people with early dementia: findings of a pilot evaluation | British Journal of Medical Practitioners | 2019;12