Unheard Voices Of People With Dementia

Alzheimer’s Society warns of generations unprepared for astronomical dementia costs

This report contains the findings of a consultation with people affected by dementia. It reveals that nearly half of the UK adults questioned had not started saving for the care and support they might need in the future, and a third agreed that before being asked, they had not considered the cost of dementia care and support. It brings together the views of more than 3,850 people with dementia, carers and the public, in a series of in-depth interviews and face-to-face and online surveys.

Full report: Turning Up The Volume: Unheard Voices Of People With Dementia

Dementia-friendly housing charter

Housing organisations urged to unite against dementia | Azheimers UK

The charity Alzheimer’s UK has published the Dementia-friendly housing charter to help housing organisations better understand dementia and how housing, its design and supporting services can help improve and maintain the wellbeing of people affected by the disease.

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Image source: http://www.alzheimers.org.uk

Research from the leading dementia charity has previously found that 85 per cent of people want to stay living at home for as long as possible when diagnosed with dementia, but that a third of the general public would not know where to find information about how to make their home and living environment suitable.

The charter, developed in partnership with Housing & Care 21, is the latest innovation from Alzheimer’s Society’s Dementia Friendly Communities programme, which aims to ensure people affected by dementia feel understood and included in all aspects of community life.

The publication can be downloaded here

Homecare is failing people with dementia: Alzheimers Society

Only 2% of people affected by dementia say homecare workers have enough dementia training. |  Alzheimer’s Society

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An Alzheimer’s Society investigation has exposed a vicious cycle where a lack of dementia training for homecare workers results in intolerable stress for people with dementia, families and carers – and for the homecare workers themselves.

Poor quality homecare is leaving too many people with dementia spending the day in soiled clothing, going without food or water, or ending up in costly hospital or care home admissions when they could have stayed at home, where they want to be, for longer.

The investigation involved a survey of homecare workers with Unison, research into the sector with Skills for Care, Freedom of Information (FOI) requests to all local authorities in England, and a survey of over 1220 people affected by dementia to gather first-hand testimonies about homecare.

Key findings from the survey of over 1220 people affected by dementia include:

  • Only 2% of people affected by dementia say homecare workers ‘have enough dementia training
  • Half (49%) of people affected by dementia do not think that ‘homecare workers understand the specific needs of people with dementia’
  • More than a third (38%) of people affected by dementia do not think that ‘homecare workers know how to treat people with dementia with understanding and dignity

Read more via the Alzheimer’s Society

Local Authorities urged to make personal budgets dementia friendly

Deep-seated misconception of personal budgets and dementia is preventing local authorities from delivering person-centred care | Alzheimer’s Society

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Image source: Alzheimer’s Society

Alzheimer’s Society is calling on all local authorities in England to urgently break down the barriers preventing people with dementia accessing personal budgets.

Fewer than a third of people receiving social care support for problems with memory and cognition have a personal budget, despite the government’s aspirations for a person-centred care and support system. The Care Act gives everyone who is receiving support from social services the legal right to a personal budget, offering them greater choice and control over their care and support.

An Alzheimer’s Society audit of local authorities’ personal budgets processes has highlighted how the majority are falling at the first hurdle, with many failing to make people with dementia aware of their entitlement to a personal budget.

Read the full overview here

Read the guide here

New research uncovers factors that can protect against cognitive decline and dementia

Alzheimer’s Society.Published online: 25 July 2016

face-535761_960_720Research at the Alzheimer’s Association International Conference 2016 in Toronto, finds that certain genes and lifestyle factors can increase resilience against the development of Alzheimer’s disease.

These resilience factors may differ between men and women and may counteract the negative effects of a poor diet on cognition.

Factors such as the number of years spent in education, having a complex job and regularly doing activities that challenge the brain can contribute to resilience by helping to build up a ‘cognitive reserve’. Cognitive reserve is the ability of the brain to withstand certain levels of damage without any loss of function.

Read the full research overview here

 

Dementia and comorbidities

Dementia Rarely Travels Alone: living with dementia and other conditions | Alzheimers Society

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Image source: http://www.alzheimers.org.uk

A report on the All Party Parliamentary Group on Dementia’s inquiry that was held last year in to dementia and comorbidities. The inquiry has brought to light the scale of difficulty faced by people living with dementia and other health conditions.

Despite significant progress to deliver integrated care services and support, the health and social system frequently treats conditions in isolation so that people with dementia and other health conditions receive disjointed, substandard care and treatment.

The report identifies the changes needed across the healthcare system so that the NHS can meet the challenge of caring for people living with dementia and other conditions, supporting them to live fulfilled lives and makes recommendations as to how this can be achieved.

View the full report: Dementia  Rarely Travels Alone: living with dementia and other conditions

Dementia Awareness Week 2016

Alzheimer’s Society. Published online 13 May 2016.

Over half (56%) of people are putting off seeking a dementia diagnosis for up to a year or more, a study carried out by Alzheimer’s Society has found. Dementia is the most feared health condition in the UK, perhaps explaining also why almost two-thirds of people surveyed (62%) felt a diagnosis would mean their life was over.

The study launches Dementia Awareness Week 2016, 15-21 May, as Alzheimer’s Society calls on people to confront dementia head on, be aware that they can do something about it and come to the charity for help and support.

225,000 people will develop dementia this year – that’s one person every three minutes. The leading dementia charity is warning that a lack of diagnosis is denying many of these people the chance of getting the best possible treatment, information and/or support – evidence shows the earlier on you receive these, the better your chance of living well for longer. It also means that thousands of people are not being enabled toplan for the future while they still have capacity to make important decisions.

Help raise awareness of the Week by sharing the film of Rhod Gilbert confronting dementia.

Dementia care in care homes

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image source: http://www.alzheimers.org.uk

The Alzheimer’s Society has published Fix dementia care:  NHS and care homes.

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image source: http://www.alzheimers.org.uk

This report marks the second phase of an Alzheimer’s Society campaign looking at the experiences of people with dementia in a range of health and care settings.  It contains the results of a survey of care home managers and the voices of people with dementia, their families and carers.  The report sets out recommendations for the government and NHS to improve the experiences of people with dementia in care homes.

Additional link: RCGP press release

 

Dementia awareness video

#sharetheorange

The makers of the Wallace and Gromit stories have recruited actor Christopher Eccleston for a film that tackles misconceptions about dementia.

Bristol’s Aardman Animation’s online film uses uses an orange to show how dementia physically attacks the brain.

Eccleston, 51, whose father had the condition, said he hoped it would “fight the misunderstanding and fatalism that surrounds dementia”.

The film was made for Alzheimer’s Research UK.

Fix Dementia Care – Alzheimer’s Society

fix dementia.pngAlzheimer’s Society wants to ensure that people with dementia receive the highest standards of care wherever they are: in hospital, in a care home, or in the home. Our latest report has uncovered some shocking examples of dangerous and inadequate care in hospitals throughout England.

Hospitals have a duty to be transparent and accountable to their patients, and to continually monitor and improve dementia care.

While there are notable examples of excellent care across the country, the difference from one hospital to the next is far too great and there is inconsistent understanding of the needs of people with dementia.

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Image source: Alzheimer’s Society

Our campaign is making the following recommendations to fix dementia care:

  • All hospitals to publish an annual statement of dementia care, which includes feedback from patients with dementia, helping to raise standards of care across the country
  • The regulators, Monitor and the Care Quality Commission to include standards of dementia care in their assessments
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Image source: Alzheimer’s Society

Read the full report here