Ruth Mantle Alzheimer Scotland Dementia Nurse Consultant Dementia Beyond Disease: Enhancing Well-Being in Dementia in remote and rural healthcare teams Ruth Mantle Alzheimer Scotland Dementia Nurse Consultant

Key Milestones - 2007- Dementia made a national priority - 2008 National diagnosis target established - 2009 Charter of Rights for Dementia in Scotland - 2010 First National Dementia Strategy - 2011 Standards of Care for Dementia in Scotland and Promoting Excellence published - 2011 National diagnosis target achieved - 2011 Dementia Demonstrator project established -2011 Chief Nursing Officer-led improvement programme on older people’s care in hospitals with programme of inspection by Healthcare Improvement Scotland. - 2012 Dementia Champion Programme launched - 2012 Post Diagnostic Support Commitment - 2013 Second National Dementia Strategy - 2014 8 Pillar Model test sites 2014 Launch of Quality & Excellence in Specialist Dementia Care 2015 Advanced Illness Model - 2017 Third National Dementia Strategy due February

Vision for Change- Transforming Lives

5 & 8 Pillar Models of Care

10 Dementia Care Actions

The Biomedical Model of Dementia Described as a group of degenerative diseases of the brain Viewed as mostly progressive, incurable Focused on loss, deficit-based Policy heavily focused on the costs and burdens of care Most funds directed at drug research

Biomedical “Fallout”… Looks almost exclusively to drug therapy to provide well- being Research largely ignores the subjective experience of the person living with the condition Quick to stigmatise (“The long goodbye”, “fading away”) Quick to disempower individuals Creates institutional, disease-based approaches to care Sees distress primarily as a manifestation of disease (“BPSD”)

Biggest Danger of Stigma  Self-Fulfilling Prophecies Kate Swaffer “Upon diagnosis I was Prescribed Disengagement™ from my pre- diagnosis life, which the health care system currently still supports. This sets up a chain reaction of hopelessness and fear, and is the beginning of learned helplessness, which negatively impacts a person’s ability to be positive, resilient and proactive, intimately affecting their perception of well-being and quality of life.”

A New Model (Inspired by the True Experts…) About seeing the person beyond the diagnosis of dementia

A New Definition “Dementia is a shift in the way a person experiences the world around her/him.”

Where This “Road” Leads… From fatal disease to changing abilities The subjective experience is critical! From psychotropic medications to “ramps” A path to continued growth An acceptance of the “new normal” The end of trying to change a person back to who he/she was A directive to help fulfill universal human needs A challenge to our interpretations of distress A challenge to many of our long-accepted care practices

Primary Goal: Enhance Well-being Question: What does “well-being” mean to you?

The World Health Organisation (WHO) recently widened their definition of health to include psychological wellbeing which they define as: ‘ a state of mind in which an individual is able to realise his or her own abilities, cope with the normal stresses of life, can work productively and fruitful, and is able to make a contribution to his or her community’.

Benefits of Focusing on Well-Being Sees the illness in the context of the whole person Destigmatises personal expressions Understands the power of the relational, historical, and environmental context Focuses on achievable, life-affirming goals Brings important new insights Helps eliminate antipsychotic drug use Is proactive and strengths-based

Suggested Ordering of Well-Being Domains

What if most of the hard-to-decipher distress that we see is actually related to the erosion of one or more aspects of the person’s well-being?? So… is it any surprise that people we care for have ongoing distress, even though we have “done everything we can think of” to solve it???

For example… Addressing physical resistance during bathing becomes more than simply adjusting our bathing technique. It involves ongoing, 24/7 restoration of well-being, especially autonomy, security, and connectedness These domains of well-being must be not only be appreciated, but actively operationalised throughout daily life This requires a transformative approach to support and care in all living environments (i.e., “culture change”)

The Key… Turn your backs on the “behaviour,” and find the “ramps” to well-being!

Getting To Know deMEntia

Risk Originates from Italian word risicare means ‘to dare’. Historically considered to be more about choice rather than fate. Today seen more as, ‘the possibility of incurring misfortune or loss’ and to expose to danger or loss’ Collins, 1998 “The only risk-free environment is a coffin” Dr Bill Thomas

‘Whilst physical safety remains key focus for healthcare, the ability to maintain self-identity and key relationships is of more importance to the person with dementia and their family’ Gilmour et .al, 2003

Practitioner Role in Risk Management Hazard Manager- identify hazards and remove or minimise threat to cause harm. Risk Facilitator- identifying and supporting activities which add to the quality of life of someone. Dilemma Negotiator- identify and reconcile differing views and seek consensus between person living with dementia, family and practitioners. Alaszewki et al 1998

Traditional risk discussions focus on downside risk Risk that an event will turn out worse than expected If person goes outside, what are the chances he will get lost, or walk into traffic? If he walks unassisted, what are the chances he will fall and be injured? At a social event, what are the chances she will be overwhelmed and distressed by the environment? Thomas & Ronch

Silent Harms ‘often unintentional, that arise from emotional, psychological or spiritual neglect’ Clarke et al, 2011 The psychological and emotional risks can remain hidden and in just focusing on the physical domain of risk there is the danger that the person is denied the opportunity to make meaningful choices and to maintain a level of independence or autonomy.

Place at the centre of decision-making the person (who happens to have dementia) rather than the dementia (which happens to be part of the person) ‘Do not let someone’s past and future life be overshadowed by dementia’ Sabat, 2011

Quality? Says who? “Quality of life is defined primarily by the person, as a person, and their circumstances, not their dementia”

Negotiating Risk Negotiating risk is neither the elimination of any activity that might produce a downside nor an acceptance of all activities without boundaries…… It is a conversation about who the person is and asks: how they stand to benefit from engaging in an activity? what the downside risks are? can they be mitigated to an acceptable degree of support? Power, 2014

Upside Risk risk that an event will turn out better than expected. If person goes outside, what are the chances he will improve his conditioning and overall mood and sleep better at night? If he walks unassisted, could it improve his balance and lead to greater independence with other activities of daily living? If she goes to a social event, could it bring meaning, growth and forestall further cognitive decline?

Principles of Positive Risk Taking Bust the myths See the individual Celebrate risk-takers Break down stigma Provide a safety net Support decision-making Adapted from JRF, 2014

Working towards Dementia Inclusive communities

Thanks for listening Any Questions? Thanks to Dr G. Allen Power for sharing the wellbeing model