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 • • • • • • • • • 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
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