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 | 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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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
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.
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.
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
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.
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.
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.
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.
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