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Evidence-informed Dementia Care – Issues and Challenges. Liz Mitchell Lecturer of Nursing University of Ulster 19 April 2012 [email protected] Topics. Context Understandings of dementia Research and best practice guidelines Issues and challenges.

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Evidence informed dementia care issues and challenges l.jpg

Evidence-informed Dementia Care – Issues and Challenges

Liz Mitchell

Lecturer of Nursing

University of Ulster

19 April 2012

[email protected]

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  • Context

  • Understandings of dementia

  • Research and best practice guidelines

  • Issues and challenges

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European Context (OECD European Union, 2010)

  • Prevalence of dementia - 7.3 million.

  • Highest prevalence: Sweden, Italy, Switzerland, Germany.

  • Most common causes: Alzheimer’s disease (50-70%), Vascular dementia (30%).

  • Rates increase with age: one-third of males (32.4%), half of females (48.8%) at age 95 years.

  • Patterns of care: informal care by families and friends & formal care at home or in institutions.

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The personal context

Dementia will affect all of us:

  • We may develop a dementia or

  • a parent or relative or

  • our husband/wife, or friend

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Dementia - a syndrome of progressive nature, affecting:

  • Memory

  • Thinking

  • Orientation

  • Comprehension

  • Calculation

  • Learning capacity

  • Language

  • Judgment.

  • Most common forms:Alzheimer’s DiseaseVascular Disease

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Alzheimer’s dementia

  • Cortex most affected.

  • Enlarged ventricles.

  • Senile plaques.

  • Neurofibrillary tangles in affected neurones.

  • Reduction in neurotransmitters - impaired communication between cells.

  • Insidious and progressive course

  • © 2000 - 2012 American Health Assistance Foundation

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Plaques Tangles

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Alzheimer’s Trajectory

Stage 1 - 2-4 years

  • Memory loss – short-term in particular

  • Mild changes in personality

Stage 2 - 2-5 years

  • Cognitive decline –language, problem solving.

  • Depression, Disorientation, Wandering

Stage 3 – 1-2 years

  • Apathy, Disinterest in food

  • Urinary and faecal incontinence

  • Difficulty recognise family or friends

  • Can develop seizures

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Vascular dementia

  • Progressive sub-cortical cell death.

  • Atherosclerosis is a causal factor.

  • Cerebral ischaemia causes cognitive impairment.

  • Cardiovascular risk management is essential.


  • small vessel disease

  • Multi-infarct dementia

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Early white matter ischaemic changes - MRI

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Vascular dementia trajectory

  • Abrupt onset with stepwise deterioration

  • Nocturnal confusion

  • Relative preservation of personality

  • Depression

  • Emotionalism

  • May have history of hypertension and stroke

  • Focal neurological signs

  • Focal neurological symptoms

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A public health priority

EU projects to enhance the evidence base surrounding dementia:

  • The EuroCoDe (European Collaboration on Dementia) project co-ordinated by Alzheimer Europe.

  • Supporting national efforts in prevention, research coordination and best practice in treatment and care (European Commission, 2010).

    National Dementia Strategies:

  • France, Norway and the United Kingdom.

  • Focus - improve early diagnosis, treatment and quality of care, and providing support to carers.

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Northern Ireland strategies

DHSSPS (2010) A partnership for Care:

  • to improve the health and well being of the people of Northern Ireland.

  • to ensure safe and effective care services are delivered.

    The Northern Ireland Dementia Strategy - DHSSPS (2011)

    Improving dementia services in Northern Ireland

  • Prevention

  • Assessment

  • Treatment of risk factors

  • Person centred care

  • Self care

  • Collaboration between care organisations, local government, independent and voluntary sectors

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  • Active Ageing

  • Keep physically and mentally fit

  • Maintaining social roles and engagement

  • Cardiovascular risk management

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Issues and Challenges

  • Low expectations of staff of the person’s ability to function, leading to an enforced reliance and dependence on support.

  • Assumed vulnerability, leading to risk averse responses.

  • Rewarding dependent responses

  • ‘Negative’ and ‘guilt’ laden language: ‘burden on carers’, ‘bed blockers’, global financial burden.

  • Over prescription of anti-hypnotics (Banerjee 2009).

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Negative social context

  • Stigma

  • Malignant social psychology

  • Social exclusion

    All impact on the quality of life and cognitive functioning of older people, particularly those with dependency on others for care

    (Kitwood and Bredin 1992, Kitwood 1997, Brooker 2007)

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Dementia - multifactorial experience(Kitwood 1997)

D - dementia

P - person’s personality or resources

B - Biography

H - physical health

NI - neurological impairment

SP - social psychology

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Sharing the diagnosis

  • Promotes openness within the family

  • Sadly friends may disappear

  • Validate the person’s experience

  • Plan for the future

  • Promotes helpful relationships with professionals

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Respect culture and beliefs -

  • includes spiritual needs, religious customs, dietary preferences, clothing preferences, jewellery, ways of doing hair.

    The life the person lived -

  • Use the name he/she prefers, support their family and friends, recognise the importance of their possessions, clothes, letters, handbag, photographs etc.

    Respect in your approach –

  • Do not rush in, do not hurry the person, allow time, spend time.

    Privacy –

  • Privacy is something so fundamental that if we forsake it, we demonstrate that we no longer care.

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The Value of Memories

  • Life Story Work - find out as much as possible about the person’s background, their culture, their life history – what that person liked to do, the music preferred, favourite movie, hobbies etc.

  • The Memory Box – have you started yours?

  • What would you put in your memory box?

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Alzheimer’s Society (2009) report: Counting the cost - caring for people with dementia.

People with dementia:

  • occupy one quarter of UK NHS hospital beds

  • stay longer in hospital than others admitted for same treatment

  • Hospital care can have a negative impact on the dementia status and on physical health.

  • Majority of people with dementia leave hospital worse than when they arrive and a third enter a care home from hospital.

  • Nurses must be equipped with the knowledge, skills and expertise to do the job.

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Some evidence based practice approaches

  • Walk in memory screening clinics

  • Early diagnosis

  • Cognitive enhancers

  • The Dementia Café

  • Community Occupational therapist input can lead to less dependence on Social and Heath care resources (Graff et al. 2006).

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Early diagnosis gives time to:

  • Maximize independence and autonomy Implement cardiovascular risk management

  • Assess for cognitive enhancers

  • Prepare for the time when the person might lose capacity – advance directives, appointment of advocate.

  • Start collecting the personal history and life story

  • Build a picture of who the person is, what his or her life experiences have been, likes and dislikes and the things they value.

    (NICE/SCIE 2007)

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Appropriate support

  • People with dementia are not ‘Problems to be managed’, but individuals who have ‘Needs’ to be meet.

  • Palliative care – a common unmet need (Hudson 2003).

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Dementia Related Research at University of Ulster

Dementia related research at uu l.jpg

Gault V, Porter WD, Flatt P, Holscher C (2010) Actions of exendin-4 therapy on cognitive function and hippocampal synaptic plasticity in mice fed a high-fat diet. International journal of obesity 34 (8). pp. 1341-1344.

Gengler S, McClean PL, McCurtin R, Holscher C (2012) Val(8)GLP-1 rescues synaptic plasticity and reduces dense core plaques in APP/PS1 mice. Neurology of Aging 33 (2). pp. 265-276.

Irwin N, Gault V, Flatt P (2010) Therapeutic potential of the original incretin hormone glucose-dependent insulinotropic polypeptide: diabetes, obesity, osteoporosis and Alzheimer's disease?. Expert opinion on investigational drugs 19 (9). pp. 1039-1048.

McCormack B, Yalden BJ (2010) Constructions of dignity: a pre-requisite for flourishing in the workplace?. International Journal of Older People Nursing 5 (2). pp. 137-147.

McCormack B, Dewing J, Breslin L, Coyne-Nevin A, Kennedy K, Manning M, Peelo-Kilroe L, Tobin C, Slater P (2010) Developing person-centred practice: nursing outcomes arising from changes to the care environment in residential settings for older people. International Journal of Older People Nursing 5 (2). pp. 93-107.

Dementia related research at UU

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McCullagh PJ, Augusto J C, Zheng H, Mulvenna M, Wang HY, Carswell W, Wallace J, Martin S, Jeffers P (2011) Assisting People with Early Stage Dementia: Monitoring Wandering. In: Everyday technology for independence and care. (Eds: Gelderblom, GJ, Soede MA, Miesenberge K), IOS Press, Amsterdam, pp. 137-144. ISBN 978-1-60750-813-7.

Mitchell EA, McCance T (2010) Nurse-patient encounters in the hospital ward, from the perspectives of older persons: an analysis using the Authentic Consciousness Framework.International Journal of Nursing Older People 10.

Mulvenna M, Doyle L, Wright T, Zheng H, Topping P, Boyle K, Martin S (2011) Evaluation of card-based versus device-based reminiscing using photographic images. Journal of CyberTherapy & Rehabilitation 4 (1). pp. 57-66.

Ryan, AA (2010) Care provision for rural dwelling older people. International Journal of Older People Nursing 5 (3). pp. 191-192.

Scott A, Ryan AA, James, I, Mitchell EA (2010) Perceptions and implications of violence from care home residents with dementia: a review and commentary. International Journal of Older People 6. pp. 1-13.

Scott A, Ryan AA, James I, Mitchell EA (2011) Psychological trauma and fear for personal safety as a result of behaviours that challenge in dementia: The experiences of healthcare workers.Dementia 10. pp. 257-269.

Zheng H, Wang H, Jeffers P, Hoda N, Mulvenna M, Martin S, Carswell W, Augusto JC, Wallace J, McCullagh P, Taylor B, McSorley K (2011) Monitoring and visualising of night time activity patterns of people with early dementia. International Journal of Integrated Care, 1

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An approach to practice established through the formation and fostering of therapeutic relationships between all care providers, service users and others significant to them in their lives.

It is underpinned by values of respect for persons, individual right to self determination, mutual respect and understanding. It is enabled by cultures of empowerment that foster continuous approaches to practice development”.

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Person-centred Nursing Framework (McCormack & McCance 2010)

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Outcomes from implementing a model of person-centred practice in Older Persons settings across Republic of Ireland(McCormack et al 2010)

  • Residents having more choice

  • More hopeful environments

  • More effective teamwork

  • Better inter-professional relationships

  • Settings being more open to change and innovation

  • High challenge with high support being practice

  • Development of facilitation skills

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Indicators of a ‘safe’ person-centred culture for older people (McCormack et al 2010)

How are older people:

  • talked about?

  • helped to form relationships?

  • enabled to retain social connections and grow through social contact?

  • helped to make sense of their space and place?

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Indicators of a ‘safe’ person-centred culture for older people (continued) (McCormack et al 2010)

  • How is dignity and respect shown?

  • How explicit are care values in the setting?

  • How are care values used to shape the way the team engages?

  • How well do I know myself as a care worker?

  • How well does the environment support person-centred care?

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Dementia Education at University of Ulster

  • Postgraduate Diploma/MSc Interdisciplinary Dementia Studies. Part time distance learning.

    Who for?

    For any health and social care professional, who works part of their time with people with dementia or their families.

    For information:

    Contact Seana Duggan, Course Director.

    [email protected]

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  • Alzheimer’s Society (2009) Counting the cost – caring for people with dementia http://www.alzheimers.org.uk/countingthecost

  • Banerjee S (2009) The Use of Anti-psychotic Medications for People with Dementia: Time for Action. A Report for the Minister of State for Care Services. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_108302.pdf (Accessed 1st June 2010).

  • Brooker D (2007) Person Centred Dementia Care: Making Services Better. London: Jessica Kingsley.

  • Department of Health (2010) A partnership for care. http://www.dhsspsni.gov.uk/8615_-_a4_partnership_web.pdf

  • Department of Health (2011) Improving dementia services in Northern Ireland http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf.

  • Graff MJL, Veroonij-Dassan MJM, Dekker J, Hoefnagels WHL, Olde Rikkert MGM (2006) Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. British Medical Journal 24 (7580) pp 1196-1201

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More references

  • Hudson R (2003) Palliative Care. In: Hudson R (Ed) Dementia Nursing – a guide to practice. Oxon: Radcliffe Medical Press.

  • Kitwood T, Bredin K (1992) Towards a Theory of Dementia Care: Personhood and Well-beingAgeing and Society 12, pp 269-28

  • Kitwood, T. (1997) Dementia Reconsidered. Buckingham: Open University Press.

  • NICE-SCIE (2006) Supporting people with Dementia in Health and Social Care. Nice Clinical Guidance 42. [Online] Available from:http:www.nice.org.uk/nicemedia/pdf/word//CG042NICEGuideline.pdf [accessed 6 December 2011].

  • OECD European Union, 2010), Health at a Glance. http://www.oecd-ilibrary.org/social-issues-migration-health/health-at-a-glance-europe-2010_health_glance-2010-en

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