Enhancing dignity in the
care of people with
dementia
Professor Lesley Baillie
Florence Nightingale Foundation
Chair of Clinical Nursing Practice,
London South Bank University and
University College :London Hospitals
Plan
What is dignity?
What influences the dignity of people with
dementia?
How can we promote dignity for people with
dementia?
Types of dignity
• Human dignity: the dignity that all humans
have and cannot be taken away
• Social dignity: experienced through
interaction - dignity-of-self and dignity-inrelation (Jacobson 2007)
• So for people with dementia:
• We must acknowledge and respect their
human dignity
• We must recognise how their dignity is
affected by how they feel and by our
interactions with them
What is the
meaning of
dignity?
How does it feel
to have dignity?
How does it
feel to lose our
dignity?
The meaning of dignity
• Dignity is concerned with how people feel, think
and behave in relation to the worth or value of
themselves and others. To treat someone with
dignity is to treat them as being of worth, in a
way that is respectful of them as valued
individuals.
(Royal College of Nursing [RCN] 2008, p.6)
Definition of dignity
• When dignity is present:
• people feel in control, valued, confident,
comfortable and able to make decisions for
themselves.
• When dignity is absent:
• people feel devalued, lacking control and comfort.
They may lack confidence and be unable to make
decisions for themselves. They may feel
humiliated, embarrassed or ashamed.
(RCN 2008, p.8)
Definition of dignity
• Dignity applies equally to those who
have capacity and to those who lack it.
• Everyone has equal worth as human
beings and must be treated as if they
are able to feel, think and behave in
relation to their own worth or value
• (RCN 2008, p.8)
Vulnerability of people with
dementia
Care
environment
and culture
Influences
on dignity
Complexity of dignity
Attitudes,
behaviour
and
interactions
with others
Individualistic
Multi-factor
Complexity
of dignity
Dynamic &
fluctuating
Multiple
influences
Vulnerability to loss of dignity for
people with dementia
• Loss of control and identity
• Specific effects of dementia and
other concurrent conditions
• Negative attitudes and stigma:
‘Undignified care of older people
does not happen in a vacuum; it
is rooted in the discrimination
and neglect evident towards
older people in British society
(p.8)
– (Commission on Dignity in Care, 2012).
How can we promote dignity?
Interactions:
Care activities:
• Respectful
communication.
• Promotes autonomy and
a sense of control.
• Inclusive and
encourages participation.
• Promotes identity.
• Recognises human
rights such as equality,
respect and autonomy.
• Focuses on the
individual. – personcentred
• Address fundamental
human needs - nutrition,
elimination, personal
hygiene/appearance - in
a respectful, sensitive
manner.
• Top tips for nurses, from
Alzheimer’s Society:
• http://www.alzheimers.or
g.uk/site/scripts/docume
nts_info.php?documentI
D=1211
• Respects privacy
(Tadd et al. 2011)
Person-centred care
‘VIPS’ framework for describing personcentred care:
V – Valuing people with dementia and carers;
I – treating people as Individuals;
P – using the perspective of the Person with
dementia;
S – a positive Social environment.
(Brooker 2007)
Person-centred care
Communication that promotes dignity
Helping people Sensitivity and compassion; Empathy;
to feel
Developing relationships; Conversation
comfortable
and friendliness; Reassurance;
Professionalism
Helping people Explanations and information giving;
to feel in
Choices and negotiation; Gaining consent
control
Helping people Giving time and listening; Concern for the
to feel valued person as an individual; Courteousness
(RCN 2008; Baillie 2009)
Individual interactions
I took him to the shower, he was
quite happy, I allowed him to do
what he wanted to do I just
supported him and he liked opera,
so I got him in the shower and
he’s singing his opera and I’m
going, “ooh, ooh”, we’re doing it
together, he was having a lovely
time. He was loving it; came out
of there all fresh and clean.
Student experience
I talked to her and asked her what
her daughter did and her daughter
was a musician and I said, “so, do
you like music”? She said she liked
classical music and I thought, we’ve
got a radio here with headphones,
you can put them on. […] I just lifted
the earpiece up to her and said, “can
you hear that music” it was a
classical music station on the ward,
put the headphones on her and she
was happy.
Student experience
Dilemmas in promoting
dignity
Scenario
• Marie goes in to visit her
aunt Margaret who has
dementia and lives in a
care home. Marie finds
that she has not been
washed and has on
yesterday’s soiled
clothes. The staff say she
did not want a wash or
clean clothes today.
Questions
• Are the care home staff’s
actions promoting
Margaret’s dignity
through allowing her
autonomy?
• Or have they diminished
her dignity as Margaret
previously took a pride in
her appearance?
• What alternatives were
there?
Dilemmas in promoting dignity
Scenario
• Tom (a former naval
captain) is on an acute
hospital ward and is
constantly packing his
bag trying to leave the
ward as he says he has to
go to sea. All morning
there is commotion as
staff try to get him back to
his bed. Tom is clearly
agitated and the staff are
stressed.
Questions
• Are the staff justified in
persisting with keeping
Tom on the ward
apparently against his
wishes?
• Or are the staff
diminishing Tom’s
dignity by preventing
him from being in
control?
• What alternatives were
there?
Culture of the care environment
• Social norms and
accepted practices
• Culture can have a
positive or negative
effect on how staff
behave
• Some wards/teams/
units/care homes have
a culture of respect for
patients and sensitivity
• Leadership is key
There's a very(Patient)
caring,
respectful approach. The
ward is friendly - there's
a nice feel about the
place. People on this
ward are sensitive to
making you feel dignity is
promoted all the time
Patient
Setting and monitoring standards
• Establish and maintain standards for a care
environment that supports dignity in care
• Set organisational expectations for:
• dignity at the core of all care activities – all staff
and all care environments
• zero tolerance of indignity
• the expectation to challenge and be challenged
• a culture of improvement and development - all
staff can be involved in improvement –
empowerment:
• Dignity champions
Example of culture change
• Project aimed to improve dignity for patients with
dementia in an acute orthopaedic ward
• 3 workshop days and a working group of ‘forget-me-not
champions’
• Designated ‘forget-me-not’ bay: homely decoration, nonclinical
• Personal care plans: likes and dislikes
• ‘The approach now is not how to get the job done but how
can we make this as pleasurable as possible for the
patient – going with the patients flow and mood rather
than a list of tasks. We enjoy their company and the bay
has its own atmosphere and feeling’.
(Sanders & Webster 2011)
Conclusions
• All health and social care staff have a duty to promote
the dignity of people with dementia
• Need to create a culture that values people who have
dementia and has dignity as a core value
• We must respect the human dignity of people with
dementia and promote their dignity through our
interactions: all interactions, all the time:
• Find out about the person’s perspective of care
and what matters to them
• Listening to individuals and try to address their
needs
• Be creative and willing to make changes
• Provide excellent fundamental care and
communicate in ways that make people feel
comfortable, in control and valued
References/further reading
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Baillie L (2009) Patient dignity in an acute hospital setting: a case study.
International Journal of Nursing Studies 46: 22-36.
Baillie, L., Merritt, J., Cox, J. (2012) Nursing students’ strategies for caring
for older people with dementia in hospital. Nursing Older People. 24(9), 2226.
Brooker D (2007) Person Centred Dementia Care: Making Services Better.
Jessica Kingsley, London.
Commission on Dignity in Care (2012) Delivering dignity: Securing dignity in
care for older people in hospitals and care homes. Available from:
http://www.nhsconfed.org/Publications/Documents/Delivering_Dignity_final_
report150612.pdf
Jacobson N (2007). Dignity and health: A review. Social Science and
Medicine 64(2): 292-302.
Matiti, M., Baillie, L. (2011) (Eds) Dignity in Healthcare: a practical approach
for nurses and midwives. London: Radcliffe Publishing Ltd.
Royal College of Nursing (2008) Defending Dignity – Challenges and
Opportunities. London: RCN.
Stokes, G. (2010) And still the music plays: stories of people with dementia.
London : Hawker Publications Ltd
Tadd W, Hillman A, Calnan S et al. (2011) Dignity in Practice: An exploration
of the care of older people in acute NHS Trusts Cardiff University and
University of Kent – Research Report.
Websites
• Alzheimer’s Society: Understanding and respecting the individual
http://www.alzheimers.org.uk/site/scripts/documents_info.php?docu
mentID=84
• Care Quality Commission: The essential standards
http://www.cqc.org.uk/usingcareservices/essentialstandardsofquality
andsafety.cfm
• My Home Life http://myhomelife.org.uk/resources/dementia/
• Royal College of Nursing Dignity campaign resources
http://www.rcn.org.uk/newsevents/campaigns/dignity
• Dignity in Care website: www.dignityincare.org.uk
• RCN Dementia resources:
http://www.rcn.org.uk/development/practice/dementia
• Scottish Human Rights Commission: ‘Care about Rights’
http://www.scottishhumanrights.com/careaboutrights/welcomepage
• SCIE – Dignity in Care:
http://www.scie.org.uk/topic/people/olderpeople/dignity
• SCIE Dementia resources:
http://www.scie.org.uk/publications/dementia/index.asp
• http://www.scie.org.uk/publications/dementia/decisions/index.asp