Homecare and Dementia
Homecare
and Dementia
Helping people stay at home
A digest of Dementia and Homecare:
Driving Quality and Innovation, produced
as part of the Prime Minister’s Challenge
Dementia & Homecare:
on Dementia
Driving Quality & Innovation
1
Some quick facts on dementia
850,000
1 million
people in the UK
currently
live with dementia1
people in the UK will
live with dementia by
20212
Two thirds of people
Only 1 in 3 with
with dementia live at
home3
dementia receive
homecare4
33%
Around 1 in 3
people with
dementia do not
have a formal
diagnosis or
contact with
specialist
services5
4
85%
85% of people would
want to stay at home
for as long as possible
if diagnosed with
dementia, rather than
go into a care or
nursing home6
A person with dementia usually
has at least four long-term
health conditions7
For source references please see page 13
For source references please see page 13
Homecare and Dementia
Foreword:
Foreword
It is a
It is a well-established fact that most people living
with dementia would choose to remain at home,
in familiar surroundings and with the people they
love and communities and friends they know.
remain
comm
Sadly,
Sadly, at present, people who have dementia face
the ca
This
outlines
is needed
to ensure that
people
a report
number
of what
barriers
to receiving
the
careliving
andwith
support
needattohome
be able
to live at
home
in an
quality
dementia
canthey
live safely
and maximise
their
independence.
It
environment which could significantly maintain or
identifies a number of practical steps required to achieve this and
improve their quality of life. Many face ignorance,
All of this is unnecessary
indicates
what is needed
of whom
to move forward, in addition to sharing
embarrassment
and
prejudice.
living as full lives as poss
a significant amount of excellent practice that highlights what can be
All of
this
is unnecessary.
homecare
has aChallenge
crucialeconomically
part to
done.
It is
intended,
as part of the Skilled
continuing
Prime Minister’s
active as w
play in enabling people to remain living as full lives as possible in
on Dementia, as a call to action for a range of people and organisations. signposting to other sour
their homes; supporting family carers and allowing them to remain
economically
astowell
stress; identifying changes in
I am
delighted and active
honoured
haveas
led easing
the hard-working,
condition and behaviour and signposting to other sources
of support
knowledgeable and committed working group (see ‘Acknowledgements’ Homecare workers shoul
in the community.
for the full list) who made this possible.
should be recognised and
Homecare workers should be skilled in supporting people
all
ofwith
homecare
in the U.K.)
My gratitude to them all; particular thanks, too, to UKHCA’s Dominic
forms of dementia. Their pivotal role should be recognised and valued.
Carter
has willingly taken
on the mammoth
task ofby
collecting
masses
worker
Thewho
commissioning
of homecare
services
the state
(still
overand care to be giv
of homecare
initthe
should
a good
of 70%
information
and forming
in toU.K.)
a single
report. facilitate and support
independence. Homecar
relationship between the individual and worker and care to be given
their contribution.
wayofwhich
protects
and promotes
theofperson’s
dignity
At in
theafront
the report
is an aspirational
description
how we think
a for and
independence.
Homecare
workers
should
be
properly
supported,
person’s experience of living with dementia might be, if all the changes we
trained, respected and remunerated for their contribution.
are recommending are implemented.
I hope you will read this
I hope you will read this digest and the full report, with the lot
intention
of people living w
of playing your part in improving the lot of people living with dementia
the lot of people living with dementia in England today.
in England today.
I hope you will read it with the intention of playing your part in improvingthe
[insert signature]
Bridget Warr
Bridget
WarrWarr
Bridget
Chief Executive, United K
Chief Executive, United Kingdom Homecare Association (UKHCA)
Chief Executive, United Kingdom Homecare Association (UKHCA)
Chair of the Dementia He
Chair
of Dementia
the Dementia
Care Champion
Chair
of the
Health Health
and Careand
Champion
Subgroup onSubgroup
Homecare on Homecare –
April 2016
part of the Prime Minister’s Challenge on Dementia
October 2015
3
The challenge for people
living with dementia in
your constituency
How confident are you that people living
with dementia in your area receive care and
support in the environment of their choice?
What support structures are in place in your
local area to make sure people living with
dementia can live at home for as long as
possible?
How many people living with dementia in a
residential or nursing care home in your local
area would prefer to be at home?
How many family carers have had to leave
work in your local area to support someone
living with dementia?
How many people in your local area living
with dementia were delayed from returning
home from hospital? How many could have
avoided admission with the correct support in
the first place?
We need you to raise these issues in your
constituencies to help us campaign for
people who live with dementia to have
choice and control over their care.
4
Homecare and Dementia
We ask that you as a
Parliamentarian…
• C
all a meeting with local councillors and
senior council officers to ask the questions
on the facing page.
• I nvolve Clinical Commissioning Groups
and heads of local NHS Trusts
• C
hampion homecare as a key facilitator
of dementia care and information
• C
ommunicate through social media, and
other channels, your support for homecare
services as a key element in providing choice
& control for people living with dementia in
the environment of their choice
• P
ut forward a parliamentary question – for
example: “What percentage of people
living with dementia were discharged
into a nursing or care home from hospital,
compared to people living without the
condition?”
• E
ngage with local Alzheimer’s Society
groups and Dementia Friends on the
questions posed on the previous page.
• F
amiliarise yourself fully with the issues
and opportunities touched on in this digest
by reading the full report on Dementia and
Homecare: Driving Quality and Innovation.
(Available to download at: www.ukhca.co.uk/
downloads.aspx?ID=488).
You can find
details for
homecare
agencies
in your
constituency
through the
UKHCA “Finding
care” page at:
www.ukhca.
co.uk/findcare/
5
Homecare’s role
Dementia & Homecare:
Driving Quality & Innovation
Homecare’s role…
Skilled professional homecare has a vital role to
play throughout the journey of dementia for both
the individual and their family, in combatting the
condition and living as full a life as possible.
6
Homecare and Dementia
For people living with dementia homecare can…
• A
lert health professionals to changes in a person’s condition
through regular contact
• Assist in making homes dementia friendly
• Support people to remain at home for as long as possible
• E
nable people living with dementia to go out and remain
connected with their community
• Help with appropriate nutrition to maintain health
• A
void changes of environment, which can be particularly
unsettling for people living with dementia
• Support with safe medication management and administration.
For families supporting someone with dementia homecare can…
• Offer ongoing support through live-in care or care by the hour
• R
educe 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…
• H
elp to discharge people who are ready to return home
from hospital
• P
rovide support and signpost to services that can reduce
admissions to hospital
• R
educe the number of people leaving work to care for a
loved one.
7
Homecare’s role
Homecare’s role in… Risk reduction
Risk reduction and the opportunity to delay or perhaps even
prevent the onset of dementia, is a growing focus for researchers
and policy makers. Issues around physical and mental health
and psychosocial wellbeing are increasingly linked to prevalence
of dementia.
Professional, skilled homecare can…
• Help people to understand the possibilities around risk reduction
• Deliver information on diet; exercise; brain and heart health
• Provide and facilitate mental and social stimulation
•Advise on whom to inform (or make a referral) if there are
signs of self-neglect or poor health
• Promote healthy, active lifestyles
• Signpost individuals and families to local support networks.
What can you do?
Encourage constituents to plan for their old age.
Call on councils to introduce care and support to people early
enough to make a difference, not delay until there is already
critical need.
Investigate whether local authorities are meeting their statutory
duties under the Care Act to supply information for people with
dementia, including to people who will be funding their own care.
8
Homecare and Dementia
Homecare’s role in… Improving diagnosis
Homecare workers can be instrumental in achieving a timely
diagnosis. Often they will spend more time with an individual than
any health professional, and are well placed to notice a change
in condition or behaviour. Gaining a timely diagnosis is vital to
establishing appropriate lines of support.
Professional, skilled homecare can…
•
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
A third of
people with
dementia
live without
a diagnosis.
•
Know how and when to report concerns in a sensitive way,
leading to an initial assessment
• Signpost individuals and their family to local support
• Explain why achieving a timely diagnosis is important.
What can you do?
Promote training developed by UKHCA and Alzheimer’s Society.
Work with local health trusts to push local diagnosis rates to 75%.
Make yourself aware of the range of medical and social services in
your constituency to help people with dementia.
9
Homecare’s role
Homecare’s role in... Supporting people
to live well
We must recognise that people can continue to live well with
dementia. Homecare is ideally placed to help this happen, offering
services that preserve daily living and preferred activities. Quality
care will recognise the needs, aspirations and wishes of the person,
not just see the condition.
Professional, skilled homecare can…
•
Understand the individual nature of dementia
•
Support independence for the individual
•
Preserve connections with the community
•
Link into the emotional needs of the individual and their family
•
Involve the family in the support package
• 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.
What can you do?
Encourage joint commissioning locally, promoting wellbeing and
maintaining a quality of life that leads to fewer acute admissions.
Champion homecare as a way to help people remain at home in
familiar surroundings and in the community.
10
Homecare and Dementia
Homecare’s role in… a good death
More than 70% of people want to die at home, yet this is the
experience for only 6% of people living with dementia. This is
unacceptable and underlines the inequalities to choice and control
faced for people with the condition and their families.
Professional, skilled homecare can…
• Promote personal choice
• Enable the individual to stay at home until they die
•
Help individuals and their family make timely decisions about
end of life care
•
Provide specialist communication and care during latter stages
of the condition
• Signpost to emotional or legal support
•
Sensitively inform individuals and their family about options
around end of life.
What can you do?
Search for and promote local efforts that
help people to die at home if they wish.
Call for up to date figures around location
of death for people with dementia through
a Parliamentary Question.
11
In order for people living with dementia to receive
the support they need, in the environment they
want it, we now need to work together to call on
all parties involved to:
1.Champion homecare as the key facilitator of dementia care and
information throughout the person’s life with the disease.
2.Give greater flexibility for homecare providers to innovate and
shape care with and for the individual.
3. Recognise and realise the value of homecare to reduce risk.
4. Prioritise homecare as a cost effective form of intervention.
5.Commission sufficient time to deliver the care people with
dementia need, in the way they want.
6.Ensure that social care, health and other services are
commissioned around the needs of the individual.
7. Call for research on care, as well as cure.
12
Homecare and Dementia
Further information/sources
ALZHEIMER’S SOCIETY (2014).
Dementia UK: Update, Second edition.
[Online] Available from: www.alzheimers.org.uk/site/scripts/
download_info.php?fileID=2323 (Infographic reference 1 and 2).
ALZHEIMER’S SOCIETY (2011).
Support. Stay. Save.
www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1030
(Infographic reference 3).
ALZHEIMER’S SOCIETY WITH PUBLIC HEALTH ENGLAND AND THE
CENTRE FOR ECONOMICS AND BUSINESS RESEARCH (2014).
The rising cost of dementia.
[Online] Available from: www.cebr.com/reports/the-rising-costs-of-dementia/
ALZHEIMER’S SOCIETY WITH KING’S FUND (2015).
Making your home dementia friendly. [Online] Available from:
www.alzheimers.org.uk/site/scripts/documents_info.php?
documentID=3113
ALZHEIMER’S SOCIETY WITH YOUGOV (June 2014).
Most people want to stay at home if diagnosed with dementia
but less than half know how. [Online] Available from:
www.alzheimers.org.uk/site/scripts/press_article.php?
pressReleaseID=1138 (Infographic reference 6).
DEPARTMENT OF HEALTH (2013).
Dementia - A state of the nation report on dementia care and support
in England. Available from: www.gov.uk/government/uploads/system
/uploads/attachment_data/file/262139/Dementia.pdf
(Infographic reference 4).
13
Further information/sources continued
DEPARTMENT OF HEALTH (2016)
Prime Minister’s Challenge on Dementia 2020 – Implementation Plan
www.gov.uk/government/publications/challenge-on-dementia-2020implementation-plan
GUTHRIE, B., PAYNE, K., ALDERSON, P., McMURDO, M.E.T.,
and MERCER, S.W. (2012).
Adapting clinical guidelines to take account of multimorbidity.
Available from www.core.ac.uk/download/files/42/9648577.pdf (Infographic reference 7).
HEALTH AND SOCIAL CARE INFORMATION CENTRE
(for Department of Health)
Patients in England with a Record of Dementia Diagnosis on
their Clinical Record (Oct 2015)
Available from: www.gov.uk/government/uploads/system/uploads/
attachment_data/file/465333/Dementia_Diagnosis_Summary_
August_2015.pdf (Infographic reference 5).
NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE (NICE)
Homecare: delivering personal care
NICE: www.nice.org.uk/guidance/ng21
UNITED KINGDOM HOMECARE ASSOCIATION (2015).
Market Stability Survey.
www.ukhca.co.uk/pdfs UKHCAMarketStabilitySurveyAnalysis
Version11201509.pdf
14
Homecare and Dementia
Title:Dementia and Homecare – Helping people
stay at home
Publication date:
April 2016
Document purpose:This is a digest of the UKHCA report
“Dementia and Homecare: Driving Quality
and Innovation”, which formed part of the
Prime Minister’s Challenge on Dementia
2012. This digest provides a summary
of why staying at home is so important
to people living with dementia and
how professional, skilled homecare
can enable this to happen. A full copy
of the document can be found at:
www.ukhca.co.uk/downloads.
aspx?ID=488.
Acknowledgements:We would like to thank members of the
Health and Care Champion Subgroup on
Dementia and Homecare, who provided
the knowledge and expertise that led to
the original report. Thanks also to those
who provided examples of best practice.
A full list can be found in “Dementia
and Homecare: Driving Quality and
Innovation”
Author:
Dominic Carter, Policy Officer, UKHCA
Contact:
Email: policy@ukhca.co.uk
Twitter: @ukhca
About UKHCA
United Kingdom Homecare Association (UKHCA) is the
national professional and representative association for
organisations providing care to people in their own homes.
Our mission is to promote high quality, sustainable care
services so that people can continue to live at home and
in their local community.
UKHCA
Registered Office: Sutton Business Centre,
Restmor Way, Wallington, SM6 7AH
Tel: 020 8661 8188
Fax: 020 8669 7100
Email: enquiries@ukhca.co.uk
www.ukhca.co.uk
United Kingdom Homecare Association is registered in England under number: 03083104