This week -17-23 May 2021- is Dementia Action Week. The Alzheimer’s Society is calling on the Government to cure the care system now. The charity has produced a short film, showing the impact the broken social care system has on carers. Without support, dementia claims more than one life.
The Cure the Care system campaign highlights the broken social care system means that in the UK, nearly 1 million people with dementia and their families are struggling to get the support and care that they need and deserve.
Decades of underfunding and neglect have led to a care system that’s difficult to access, costly, inadequate and deeply unfair. The coronavirus pandemic has exposed these problems like never before.
Until things change, a dementia diagnosis will continue to claim more than one life, as families facing dementia feel its destructive effects. The charity underlines that it doesn’t have to be this way.
With the right support people with dementia can live a good quality of life, doing what matters most to them for as long as possible (Source: Alzheimer’s Society).
There are also a range of resources including the poster below
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.
Kuźma, Elżbieta et al.| 2018| Stroke and dementia risk: A systematic review and meta-analysis| Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association , Vol. 0 , Issue 0 | https://doi.org/10.1016/j.jalz.2018.06.3061
A new systematic review and meta- analysis is the first to conduct a meta-analysis of the relationship between stroke and all-cause dementia risk. This systematic review and meta-analysis provides evidence that stroke is a strong independent risk factor for dementia. The review is published in Alzheimer & Dementia: The Journal of the Alzheimer’s Association.
Stroke is an established risk factor for all-cause dementia, though meta-analyses are needed to quantify this risk.
We searched Medline, PsycINFO, and Embase for studies assessing prevalent or incident stroke versus a no-stroke comparison group and the risk of all-cause dementia. Random effects meta-analysis was used to pool adjusted estimates across studies, and meta-regression was used to investigate potential effect modifiers.
We identified 36 studies of prevalent stroke (1.9 million participants) and 12 studies of incident stroke (1.3 million participants). For prevalent stroke, the pooled hazard ratio for all-cause dementia was 1.69. Study characteristics did not modify these associations, with the exception of sex which explained 50.2% of between-study heterogeneity for prevalent stroke.
Stroke is a strong, independent, and potentially modifiable risk factor for all-cause dementia.
Alzheimer’s Society | September 2018 | Keeping connected: The right support at the right time
Dementia Connect, is a new service being developed by the Alzheimer’s Society to keep in touch with and support people affected by dementia. The service, currently available in Penine Lancashire- where it is being piloted- involves specialist dementia advisers assessing and addressing the needs of people who either contact the service themselves or who are referred to Dementia Connect.
The new service provides a combination of face-to-face support with telephone and online advice, so people can access the help that they need, when they need it. It is part of The Alzheimer’s Society strategy New Deal on Dementia, which aims by 2022, for everyone affected by the condition to be offered information, advice and support (Source: Alzheimer’s Society).
Full details and to read about the impact of the service on people affected by dementia visit Alzheimer’s Society
People affected by dementia can make a unique and valuable contribution in every stage of research. Alzheimer’s Society has championed the active involvement of people affected by dementia in research for nearly two decades through it’s Research Network , helping to ensure it funds the highest quality, relevant research on dementia.
Alzheimer’s Society has pioneered the involvement of people affected by dementia in its research programme since 1999. During this time its Network of people with dementia, carers and former carers have been actively involved in all research funded by the Society and has developed over 100 individual research partnerships to ensure that the dementia research community across the UK has access to lived expertise of dementia in the design, delivery and dissemination of their research.
In 2017 Alzheimer’s Society undertook an evaluation of the impact of the Research Network by interviewing and surveying researchers and people affected by dementia about their involvement. The findings clearly establish that involving people affected by dementia has benefits across all types of research and across four themes:
Impact on volunteers
Impact on researchers
Impact on research
Impact on Alzheimer’s Society
A report has been published which includes a number of quotes from researchers across each of these four themes and a short video which describes impact.
Bringing dementia out: working with LGBT+ communities | Natasha Howard | Alzheimer’s Society
In this blog, Natasha Howard shares the latest developments from Alzheimer’s Society’s innovative LGBT+ and dementia project.
The approach of the project has been to work together with stakeholders and those affected by dementia to define the problems and find an effective solution. Learning from people who are directly affected, Alzheimer’s Society hopes to meet their needs and make a difference to people’s lives. The project follows the Innovation LIFE model – Learn, Investigate, Find and Experiment.
Dementia – the true cost: fixing the care crisis | Alzheimer’s Society
This report from Alzheimers Society is based on qualitative research from five listening events with people affected by dementia, social care professionals and dementia lead nurses in Winchester, Newcastle, Birmingham, Cardiff and Belfast. In total, evidence and testimony was gathered from over 70 people to get an in-depth understanding of the challenges they face day-in and day-out to get the care they need.
The report highlights the inadequacies in the care system regarding dementia patients. The number of potentially unnecessary hospital admissions among dementia patients has risen by 73% across 65 hospital trusts, from 31,000 in 2012 to around 55,000 in 2017. Some of this apparent increase may be attributable to better recording over that period but the report said that this could not account for the full increase.
My future wishes: Advance Care Planning (ACP) for people with dementia in all settings | NHS England | Alzheimer’s Society | tide
The guide provides signposting, information and support for colleagues in health, social and community care settings, around advance care planning for people living with dementia. It identifies key actions from the point of an initial diagnosis of dementia through to the advanced condition, in order to highlight and prompt best practice irrespective of care setting.
It also considers situations where it has not been possible to initiate an ACP / future wishes conversation early and provides some tips on how to manage this.
The aim of this resource is to help practitioners, providers and health and social care commissioners:
create opportunities for people living with dementia to develop an ACP through
initiating and / or opening up conversations;
ensure advance care planning is fully embedded in wider inclusive, personalised care and support planning for dementia;
ensure people living with dementia have the same equal opportunities as those
diagnosed with other life limiting conditions / diseases, in terms of accessing palliative care services / support.
Writing a poem about how you or a loved one has been affected by dementia can offer relief for both writer and reader. It can also provide a powerful insight into what dementia means for those living with it every day.
This blog post from the Alzheimer’s Society, published on World Poetry Day, features three poems written by people affected by dementia. Despite their experiences being very different, each poet chose to share their work in the hope it might help others in a similar situation.