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