Dominic CarterPolicy Manager
Alzheimer’s Society
Dementia and quality
homecare:
Challenge and
opportunity
Alzheimer’s Society
Alzheimer’s
Society
Our vision
A world without dementia
Our mission
• Change the face of dementia research
• Demonstrate best practice in dementia care and support
• Influence the state and society to enable those affected by
dementia to live as they wish to live.
Influencing Plan 2019-22
• Quality
• Access
• Cost
Alzheimer’s Society
Changing the future, now
Dementia: Why is
quality care so
important?
850,000 people living with dementia in the UK,
rising to 1 million by 2021
225,000 people develop dementia each year,
about 1 every 3 minutes
Currently no cure, so social care even more vital
Cost of £26billion a year, or £32,250 per person
Social care costs three times as high as
healthcare costs
Alzheimer’s Society
Dementia homecare in UK
A significant proportion of dementia care is provided in people’s own homes, as it should be,
with up to 400,000 people with dementia in receipt of some homecare
• Estimated 60% of people using homecare services have some form of dementia
• 85% of people would choose to stay at home for as long as possible if given a diagnosis of
dementia
• Estimated more than £2bn spent on homecare for people with dementia each year
• 2/3 of people with dementia live at home
For families supporting someone
with dementia homecare can…
• Offer ongoing support through live-in
care or care by the hour
• Reduce pressure on family carers and
friends by providing respite care
• Enable family carers to remain in work
• Offer family training and signpost to
emotional support
For the wider health system and
economy homecare can…
• Help to discharge people who are
ready to return home from hospital
• Provide support and signpost to
services that can reduce admissions to
hospital
• Reduce the number of people leaving
work to care for a loved one.
For people living with
dementia homecare can…
• Alert health professionals to
changes in a person’s condition
• Assist in making homes dementia
friendly
• Support people to remain at
home for as long as possible
• Enable people to remain
connected with their community
• Help with appropriate nutrition to
maintain health
• Avoid unsettling changes of
environment
• Support with safe medication
management and administration
Homecare’s role in... Supporting
people to live well
• Support independence for the
individual
• Preserve connections with the
community
• Link into the emotional needs of the
individual and their
• Promote positive risk taking
• Suggest and implement useful
technologies
• Maintain records that can be shared
with other professionals
• Alert, recommend or change issues
relating to the home environment,
such as lighting or flooring
Homecare’s role in… a good
death
• Promote personal choice
• Enable the individual to stay at
home until they die
• Help individuals and their family
make timely decisions
• Provide specialist communication
and care
• Signpost to emotional or legal
support
• Sensitively inform individuals and
their family about options around
end of life.
Homecare’s role in…
Improving diagnosis
• Help to breakdown the stigma
related to dementia
• Reassure individuals and
their families about the process
of diagnosis
• Recognise and record
possible signs of dementia
• Know how and when to report
concerns in a sensitive way,
leading to an initial
assessment
• Signpost individuals and their
family to local support
We found examples where….
Challenges around communication led to people not being
washed in weeks, or eating so little they lost half their body
weight
Care workers addressed family instead of the individual or
ignored the person with dementia
Care workers so worried about how to handle situations they
would just leave rather than provide care
Infections being missed that led to hospital admission
Safeguards not followed leading to people walking into the
road at night
Supporting staff to provide quality care
Alzheimer’s Society
The current landscape of dementia training
Care certificate outlines basic requirements
A good start, however limited to awareness training, similar to Dementia Friends
Most training provided in house –accessibility to quality, recognised training an issue
Funding of training a problem, including payment for training time
Staff turnover
AS and UKHCA combined forces to develop new
training programme aimed at lead trainers
One day programme based around NHS Well
Pathway for Dementia (Diagnosing well.
Preventing well, Living well, Dying well and
Supporting well).
Project board formed with representatives from AS,
UKHCA, homecare providers and Skills for Care
Rigorous evaluation
Being part of the
solution
Centre of Excellence for Independence at Home
Alzheimer’s Society
Our research questions
What are the factors that put people living with dementia at risk of losing their independence and how can these be mitigated?
How are family carers, who support people with dementia living in their own homes in many different ways and situations, best supported themselves?
How can home care workers best enable people living with dementia to retain independence?
Alzheimer’s Society
What researchers are doing
Stream One Stream Two Stream Three Stream Four
Deepen our
understanding of
how people with
dementia live
independently at
home – with or
without home care
support – and why
they lose
independence.
Co-develop, pilot
and test NIDUS
family – an
intervention for
people with
dementia and family
carers focusing on
improving
functioning and
wellbeing to
maintain
independence.
Co-develop, pilot
and test NIDUS
professional – a
training and
supervision
intervention for
home care workers
to help them better
support people with
dementia living at
home.
Evaluate NIDUS
interventions to
guide
implementation and
increase the
likelihood that
research benefits
are translated into
practical benefits.
Stream one: What do we want to find out?
In people with dementia living in their own homes:
What are the factors that put them at risk of losing their independence and how can these factors be managed?
How can family carers be supported to deliver care and manage behaviour that challenges?
How can home care workers best enable them to retain their independence?
Project timeline: Stream One
1 March 2018-28 Feb 2019
Conduct 50 interviews with people living with dementia, informal carers, home care workers/managers and NHS health professionals
Conduct observations with 6-8 professional home carers and 30-40 of their clients
Complete four systematic reviews of the literature - How and why do people living with dementia lose independence?
Begin co-production of NIDUS family intervention
Plan for co-production of NIDUS-Family intervention
From September 2018:
Workshop to agree a schedule and process for the six month workshop phase of development.
Agree an outline overall structure, content and process of the new intervention.
Discussions will be guided by the Stream one evidence base and attendee expertise (academic and by experience).
Bringing our findings together
We will then use what we find to develop and test two interventions aimed at increasing the time people with dementia are able to live at home:
1. The NIDUS-family intervention for people living with dementia and their carers in their homes
2. The NIDUS-professional intervention for paid home care workers
Alzheimer’s Society
What is the situation facing care?
• Symptoms of dementia mean it is social care, not NHS care that
supports their health condition
• Social care crisis a dementia crisis
• Councils tasked with care provision have had budgets cut by 40%
since 2010
• 30,000 shortfall in care home beds by 2025
• We found 50,000+ avoidable admissions and 1400 people
spending Christmas in hospital despite being fit to go home
• Informal care supply running out and families close to collapse
• More people living with ‘severe’ dementia (now close to 50%)
• Quality and access to care has declined
• 1.2million people with unmet need
• Over 1/5 of dementia services in England rated as failing by
CQC
18
People affected by dementia shoulder two
thirds (£17bn a year) of care costs
in the UK
• We estimate typical dementia costs to be around
£100k, although this can be as much as £500k+
• This would take 125 years to save for
• We believe ‘dementia care’ frequently costs up to 20-
40% more than for people without the condition
.
• 670,000 family carers saving the economy £11bn plus
a year
• However, 61% of family carers say their health has
been negatively affected as a result of caring for
someone with dementia
PAYING FOR DEMENTIA CARE
Alzheimer’s Society
October:
14% chose
social care
7th highest
ranked concern
Which of the following do you think are the most important issues facing the country at this time? Please tick up to three.
June:
15% chose
social care
6th highest
ranked concern
Social care usually comes above education, crime, the environment,
welfare benefits and pensions. Below brexit, health, immigration, the
economy and housing.
Social care performs fairly consistently, whereas things like crime
and defence tend to fluctuate far more depending on external
environment.
March 18:
16% chose
social care
7th highest
ranked concern
September 18:
18% chose
social care
6th highest
ranked concern
Alzheimer’s Society
October:
12% chose
social care
8th highest
ranked concern
Which of the following issues are the most important issues to you when deciding who to vote for? Please tick up to three.
June:
N/A
Between Oct 17 – Sep 18 Tories choosing social care has increased
by half, Labour by a third and Lib Dems by more than half.
Highest (21%) among 50-64yr olds (Sep 18)
More important to Lib Dems (25%) and Labour (22%) voters than
Tories (12%) (Sep 18)
March 18:
14% chose
social care
7th highest
ranked concern
September 18:
15% chose
social care
6th highest
ranked concern
October
72% felt worried,
angry or
frightened
36% (highest
value) ‘Angry’
among Tory
voters
Biggest ‘worriers’
and
‘frightened’18-24
and 25-49
How do you feel about the possibility of losing your home to pay for social care if you develop dementia? Please pick one option.
June
63% felt worried,
angry or
frightened
September ‘18
69% felt worried,
angry or
frightened
18-24yrs most
worried (30%)
March ‘18
66% felt worried,
angry or
frightened
50-64yrs most
angry (32%)
Alzheimer’s Society
Other top line messages – Polling from Sep 2018
54% support an increase of 1% on income tax over the age of 40
50% of people either think dementia care would be free on the NHS or don’t know
81% incorrectly (or ‘don’t know’) chose typical cost of dementia care
• 12% (highest figure) thought £25-50k
60% of people think the ‘dementia tax’ still exists
15% of people believe someone close would be willing and able to provide full time care
Alzheimer’s Society
Possible reasons for optimism!
• Green paper on care reform
• NHS Long Term Plan – focus away from acute and into community. Delaying or reversing frailty
• Prevention strategy and green paper – social prescribing
• Review of the PM Challenge
• Industrial Strategy – Grand Challenge on Ageing - Tech