Dem 304
Enable rights and choices for individuals with
dementia whilst minimising risks
Jacqui Ramus
Practice Development Manager
Learning outcomes
• To understand how legislation, policy and procedure affects
the way you work with people living with dementia to
support their rights and choices, while minimising the risk of
harm.
• To maximise the rights and choices of people living with
dementia
• To involve carers and others in supporting people with
dementia.
• To be able to maintain privacy, dignity and respect of
individuals with dementia while promoting rights and choices
Dem 304
Enable rights and choices for individuals with dementia whilst minimising
risks
THE ROLE OF LEGISLATION IN
PROTECTING PEOPLE’S RIGHTS
Introducing the new identity
Approaches to enable rights and choices for
individuals with dementia whilst minimising risks
Key legislation:
Mental Capacity Act
Safeguarding adults
Lasting power of attorney
Vetting and barring scheme,
Key legislation affecting those living with
dementia
Mental Capacity Act: Five principles
Assume the person has capacity in the first instance
Ensure that all practical steps to help person to make a
decision have be taken before deciding they lack capacity
Do Not treat someone as unable to make a decision
because he makes an unwise decision.
Make any decisions in the Best Interests of the
person concerned
Ensure that any preventative action is the least restrictive
option
The MCA in practice
• Ken is 78 and lives at home with his wife, Lucille. Ken’s
memory is variable (he has dementia) and he has to be
reminded to wash and told that he has already eaten.
Lucille makes a lot of his day-to-day decisions for him.
However, he still goes on his own to his local social club
once a week with his neighbour where he meets with
friends. Sometimes he loses a lot of money at card
sessions at the club. Lucille wonders if she should take
control of all his finances to limit his spending. This is
causing considerable conflict between them. She asks you
about it?( Example from Community Care and Primary Care Training
Set, DOH 2007)
• What could you say?
Introducing the new identity
You could:
• Help Lucille to think that Ken’s decision about
spending his money at cards is a separate decision
which has to be assessed separately from his capacity
to make other types of decisions
Introducing the new identity
Safeguarding vulnerable adults
•
•
•
•
To empower people
To protect people,
To prevent possible abuse or neglect
To identify proportionate responses
to any concerns
There are six main
reasons for safeguarding • To encourage partnership and
accountability of agencies involved.
policies and procedures
Criminal records (CRB)
Criminal Records Bureau checks are
designed to bar unsuitable individuals
from working with vulnerable groups
including children, and in ensuring
that organisations can access criminal
record information on individuals
when the role justifies it.
Independent Safeguarding Authority
The ISA makes independent
barring decisions following
referrals from employers or
other organisations and the
notification of relevant
(automatic barring)
offences.
Employers have a legal duty to
refer to the ISA when a person
working in regulated activity has
harmed a child or adult, or there
was a risk of harm (usually
following their own disciplinary
processes). Anyone barred by the
ISA cannot work or volunteer
with the group or groups from
which they are barred.
Disclosure and Barring Service (DBS).
On 1st December 2012 the Criminal
Records Bureau (CRB) and the
Independent Safeguarding Authority
(ISA) will merge into the Disclosure
and Barring Service (DBS). This new
organisation will combine the criminal
records and barring functions.
Lasting Power of Attorney
A Lasting Power of Attorney (LPA) can be used to help plan
how a person’s health, wellbeing and financial affairs will be
looked after. It allows someone to plan in advance:
• the decisions s/he wants to be made on their behalf if they
lose capacity to make them their self
• the people he/she wants to make these decisions
• how he/she wants the people to make these decisions
• it has to be registered with the Office of the Public Guardian
before it can be used
Dem 304
Enable rights and choices for individuals with dementia whilst minimising
risks
MAXIMISING RIGHTS AND
CHOICES
Raymond’s money
The film portrays Raymond, a man in his 80s and recently diagnosed with
dementia, and Wendy his paid care worker. The setting is Raymond's flat.
Wendy visits daily to provide Raymond with practical support to manage at
home. The context of the drama is whether Raymond has capacity to make
a decision about spending 50 pounds on lottery tickets.
– Does Raymond have capacity to ask Wendy to purchase the tickets?
– Should Wendy be the one to purchase them?
– What information might need to be shared or recorded with regard to
this?
– What monitoring might there need to be around this situation?
– Think about the legislation covered earlier. How do you think this
applies to Raymond’s situation?
Raymond’s money
• Despite Wendy's efforts to engage him in conversation, Raymond remains
largely silent until she goes to leave. He then becomes animated about the
lottery and asks her to buy 50 pounds worth of ‘lucky dip' tickets. Initially
Wendy's response lacks respect for Raymond's request. After further
discussion, Wendy decides that Raymond has capacity to make what
others might think an ‘unwise decision'.
• While supporting Raymond to make his own independent decision,
Wendy records the decision to comply both with the MCA and good
record-keeping practice. The final scenes show Raymond enjoying himself
as he checks his tickets against the results.
Risk and rights
People with dementia are often seen as
more vulnerable to risk than other people
but it may be more useful to think about
vulnerable situations rather than vulnerable
people. Nothing Ventured, Nothing Gained’: Risk Guidance for people with
dementia, DOH publication 2010
Personal account of living with dementia,
“Each day brings its own catalogue of risks, some minor and
some dangerous. But over time and with forgetting, there is the
risk of being put on the side-lines, of being seen as a hindrance,
and having control taken away from you, under the guise of it
being for your own good. So, while we can, we must challenge
the risks… People living with a dementia must be allowed to
take risks, because if we don’t, we are in danger of relaxing into
the disease. At times we feel hopeless. At times the hurt we
feel is indescribable and we can let it be a barrier to life. But
there is a life for us, if we risk it.”
(Quote: Morgan, 2009, 28 from Nothing Ventured, nothing gained risk guidance for
people living with dementia, 2010 DOH publication )
Risk management and best interests decisions
take an
individualised
approach to
risk and
dementia;
find out what each
individual knows and
understands about the
impact that their dementia
has - instead of making
assumptions about what
they know;
try to solve problems
practically.
Positive risk taking
• Step 1 – Understanding the person’s needs.
• Step 2 – Understanding the impact of risks on the person.
• Step 3 – Enabling and managing risk.
• Step 4 – Risk planning.
Nothing Ventured, nothing gained risk guidance for people living with dementia, 2010
DOH publication
Justifiable actions to prevent someone from doing
something because it is ‘risky’ should only be taken
if : • all reasonable steps have been taken to make the action safe;
• reliable assessment methods have been used which consider
it unsafe;
• information has been collated and thoroughly evaluated;
• decisions are recorded, communicated and thoroughly
evaluated;
• policies and procedures have been followed; and
• practitioners and their managers adopt an investigative
approach and are proactive.
In relation to risk taking and best interests
decisions:• Understand your own fears and concerns about risk
• Understand the legislation of safeguarding and mental capacity
• Identify the real risk level and the benefits of the activity to
the person in question
Identifying risk and impact
Risk Area
What would be
the impact if
harm
happened?
How likely is it
that any harm
would happen?
( H/M/L)
To self / others
How severe would
the harm be?
( H/M/L)
To self / others
A person with
dementia who
wishes to
continue to cook
her own meals but
has been
forgetting to eat.
The person could
become severely
malnourished and
ill
H - Without any
intervention it is
highly likely that
there would be
harm
H - The harm could
be severe
Source: Nothing Ventured, nothing gained risk guidance for people living with dementia, 2010 DOH publication
Risk and quality of life of one example at
issue
Contribution to quality of life
Risk to individual
High ‐ relates strongly to top needs
High ‐significant harm is likely
Medium ‐ delivers value but not much
Medium ‐likely or significant but not
both
Low ‐ weak contribution to needs
Low ‐harm neither likely nor significant
Source: Nothing Ventured, nothing gained risk guidance for people living with dementia, 2010 DOH publication
Introducing the new identity
HEAT MAP (Nothing Ventured, nothing gained risk guidance for people living with
dementia, 2010 DOH publication)
High
Contribution
to quality
of life
Medium
Low
Maximise safety to
manage risk to
protect the
individual and
manage the activity
Carefully balance
safety and
management to
protect the person
Some safety
improvement
necessary
Consider how the same
personal benefit can be
substituted or delivered
in a different way
Carefully balance safety
improvement and
managing the activity to
protect the person
Improve safety to
ensure the activity can
be safely carried out
The person is at severe
risk with little benefit to
him/herself
Consider the real value
of the activity to the
individual and seek
alternatives that are
lower risk, but meet the
same needs
Allow the activity
High
Medium
Low
Risk of harm or quality of life to the individual
Practical use
Think about someone you work with who might sometimes
make unwise decisions, or do things you consider risky
• How could the identifying risks and impacts table and the
Heat Map be used for people that you work with?
• What role could you have in this?
• Who else should be involved in identifying risks, and best
interests decisions
Dem 304
Enable rights and choices for individuals with dementia whilst minimising
risks
WORKING WITH OTHERS
Introducing the new identity
What information should be shared with others?
• What do we mean by confidential information?
• When might it be harmful to share information with relatives,
other carers or other professions?
• When might it be harmful not to share information relatives,
other carers or other professions?
Dem 304 Approaches to enable rights and choices for individuals with
dementia whilst minimising risks
INVOLVING FAMILY AND SIGNIFICANT
OTHERS IN DECISION MAKING
Involving others in decision making?
• Why should family and other significant people be involved in
decision making?
• What conflicts might there be in relation to agreeing risks,
promoting rights and choice and agreeing solutions?
Managing concerns and complaints - exercise
• If a service user is unhappy about a service what would you
do?
• If a relative is unhappy about a service being delivered what
would you do?
Dem 304 Approaches to enable rights and choices for individuals with
dementia whilst minimising risks
MAINTAINING PRIVACY,
DIGNITY AND RESPECT
Exercise
How can you maintain privacy and dignity when providing
personal and intimate care?
How can you provide choice when providing personal and
intimate care?
Social aspects to promote dignity and respect
• How do we know that a person is showing us respect and
treating us in a dignified manner?
• How can you apply this to the people that you provide a
service for, and their relatives and significant others
Dem 304 Enable rights and choices for individuals with dementia whilst
minimising risks
HOW PHYSICAL ASPECTS OF THE ENVIRONMENT
ENABLING CARE WORKERS TO SHOW
RESPECT AND DIGNITY FOR AN INDIVIDUAL WITH
DEMENTIA
Introducing the new identity
Physical aspects of the environment and living
with dementia
• Signs: use signs to direct people to things
• Colour: use colour contrast to help to identify edges of
crockery.
• Flooring: changes in flooring can be ‘seen’ differently and
interpreted as wet, slippery, steps etc due to changes in
processing depth and perception in brain function
• Assistive Technology and home adaptations
Managing technology
• Use simple instructions on, or beside equipment
• Use colour contrast on switches (a dark background with
light numbers often helps people to see)
• Try to encourage use of the equipment to help retain
memory
Introducing the new identity
What we have covered today?
• How legislation, policy and procedure affects the way you
work with people living with dementia to support their rights
and choices, while minimising the risk of harm.
• How to maximise the rights and choices of people living with
dementia
• How to involve carers and others in supporting people with
dementia.
• To maintain privacy, dignity and respect of individuals with
dementia while promoting rights and choices
How will any learning from today’s session be put
into practice?
• Stop: Is there anything that you believe you will stop doing
in relation to enabling rights and choices in the future, as a
result of today’s workshop, which will improve your practice.
• Start: Is there anything that you believe you will start doing
in relation to enabling rights and choices in the future, as a
result of today’s workshop that will improve your practice.
• Continue What will you continue to do in relation to
enabling rights and choices in the future, as a result of today’s
workshop that will maintain your practice.
Jacqui Ramus Practice Development Manager