Family carers’ narratives of the financial consequences of young onset dementia

Bayly, M., O’Connell, M. E., Kortzman, A., Peacock, S., Morgan, D. G. & Kirk, A. | 2021| Family carers’ narratives of the financial consequences of young onset dementia | Dementia | https://doi.org/10.1177/14713012211009341

This study takes a qualitative approach to explore how family carers of persons with young onset dementia understand their experiences (n equal to 8), with a focus on financial consequences and how they may be ameliorated by support

Abstract

Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared. Narratives were inductively coded and analyzed using a thematic narrative approach. Carers described a voluntary or involuntary end to employment for the person with young onset dementia around the time of diagnosis. This engendered ongoing and anticipated financial consequences, combined with the need for carers to balance employment with the provision of care (which often meant early retirement for spousal carers). Common themes were tension between the needs to provide care and earn income, altered financial prospects, costs of care, and lack of available and accessible supports to ameliorate financial consequences. Findings illustrate the reality of financial consequences across the trajectory of young onset dementia. These consequences may manifest differently for spousal and child carers and are not being adequately addressed by existing supports.

Full paper available from Dementia

NIHR: Informal dementia carers had to make difficult decisions about paid care during COVID-19

NIHR | January 2021 | Informal dementia carers had to make difficult decisions about paid care during COVID-19

Often people in the community living with dementia rely on informal, unpaid carers such as family and friends. Researchers wanted to find out how the first nationwide COVID-19 lockdown affected unpaid carers, and how they made decisions about accessing paid care. They conducted telephone interviews with 15 unpaid carers during the first wave of the pandemic (April and May 2020 ). From this sample almost three quarters (73.3%) of the carers lived with the person they were caring for. A little over half (53.3%) of carers were caring for their spouse.

Now this, the first study to report on the impact of COVID-19 on paid home care for people living with dementia, highlights how unpaid carers had to increase their care hours, but also areas of concern and difficult decisions carers had to make.

The researchers drew three themes from the interviews:

  • Carers felt concerned by the risk of paid carers bringing coronavirus into the home. Lack of personal protective equipment (PPE) and feeling unprepared to provide additional care heightened these fears: “I didn’t know how to use all the equipment and I didn’t feel safe and also didn’t know how to protect myself from injury and well and being of risk to Mum”.
  • Carers had difficult choices to make. Many avoided hospitals and other health providers. They struggled to weigh up the options of cancelling or continuing paid care and some described real fears of re-obtaining paid care post-COVID if they cancelled during lockdown.: “..a family friend of ours who’s already been told by their social worker that because they’ve managed without the [paid] care then they’re not likely to get it back after the coronavirus”.
  • Implications for unpaid carers included increased workload and difficulty in accessing food deliveries: “At the moment I can’t get an online shopping slot. Trying to get through to the helpline to get us put on the vulnerable list has proved an impossibility, I’ve spent hours and hours and hours on the phone which gives you a layer of angst that on top of everything else you don’t need”.

Lead author Clarissa Giebel, Research Fellow, Department of Primary Care & Mental Health, University of Liverpool & NIHR ARC NWC

When we did these interviews in April, most family carers were so afraid of the virus that they cancelled paid care, even though they desperately needed it. As a result, they got overburdened. I’ve spoken to people as part of a new study who said they got so burnt out during COVID that they had to send their loved one to a care home. We need to remember those carers are people in their own right and they need psychological support and care support too.

Clarissa Giebel, Research Fellow, Department of Primary Care & Mental Health, University of Liverpool

Read the full NIHR Evidence update Informal dementia carers had to make difficult decisions about paid care during COVID-19

Primary paper available from BMC Geriatrics

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