INDIVIDUAL TRANSITIONS

1. INDIVIDUAL TRANSITIONS ‘Moving Forward Together’ New Zealand Council of Christian Social Services Wellington 29-30 March 2012

2. Transitions • Life is defined throughout by transitions • We all have our own musical score of transitions • Major ones occur in early and later life • Early transitions are guided (for most) developmental, expansive, anticipatory, contributing • How do we guide our later, post-mature, transitions? autonomy, self-determination, respect, life value, self v community, independence v inter-dependence, paternalism v choice, my ethics or yours, role of the law, persuasion v adjustment, contributing v society burden

3. The Transition into ARC • Major life event (incl. prior main carer/significant other) • Disconnection • Step down in fragmentation of self-identity (dementia) • Psychological harbinger with emotional ‘baggage’ • Change in chosen environment • Decision usually precipitated by others • May not have preparatory period • Relief at safety, security and monitoring • Relief of carer burden • Escape from loneliness and enjoy activities • Laudable and valuable example of societal care • Not needed by the majority

4. How Do We Cope With This Transition? Consider: • Impact on the individual • Whose decision or choice or need? • Active or passive? • Need to reflect on need for this construct • societal • individual • How does it fit within ageing? • Impact and influence on ageing perceptions of others? • A transition is not defined by the leap or even the take-off and landing but the purpose and need for the new direction or journey

5. Key Background Concepts • Population ageing • Urbanisation • Global financial crisis • Change in social networks • Societal change • Frailty • Blurring of ethical frameworks • Functional impact of health loss in older people • Reversibility of functional loss • Lack of training in ‘health of older people’

6. The Age Of Ageing • Life Expectancyhas doubled over the last 200 years • Previously not changed for thousands of years, so we have no cultural history to help us adjust • The increase in life expectancy is not slowing and progresses by 2 years every decade (due to environmental & nutritional >medical changes) • Longevityhas also shown an accelerating increase over the last 20 – 30 years • Death rates in > 80 year-olds are falling - without adjusted health & social perceptions

7. Health & Wellbeing As We Age • Is interactive with our physical, social and economic environment • Much early research was cross-sectional • Supported now by longitudinal research • ‘Broader determinants of health’ • Need to identify specific pathways amenable to intervention • Clinical studies, community care, and urban/community design have informed environment redesign to support older people • Little intervention/outcome analysis to date, rigorous evaluation needed as many confounding factors • Large potential but considerable investment at stake

8. Social Networks ‘Ties’ that make the whole i) greater than sum of individuals & ii) enact differently Groups within the network form a range of network patterns ‘Connection’ and ‘contagion’ concepts Rules: We shape and reshape our networks: homophily, structure/size, tie type Our network shapes us Our friends affect us Our friends’ friends’ friends’ affect us The network has a life of its own Six degrees of separation and three degrees of influence Underpin communities, healthy life styles, culture, economic behaviour, national directions and identity If we want to change health we need to influence networks ‘Connected’ Christakis and Fowler 2010 Harper Press

9. Health In Older People Differences • Ageing processes change the response and capacity of physiological systems • Presentation, investigation and treatment of disease is different from that in younger people • Even minor loss of health may cause significant unstable disability and drive functional recovery and support needs Consequences • Specialist knowledge is required • Access to specialised rehabilitation is essential • Extensive community and primary linkages are required • This population is driving major changes in the health sector

10. Acute Presentation In Older People • Complex co-morbidity with long term conditions • High incidence of side-effects and complications e.g. delirium, infections • Non-specific and atypical presentations requiring complex assessment • Rapid deterioration if left untreated: due to lack of physiological reserves and homeostasis • Associated disability • Need specialised knowledge to assess potential for reversal • May not allow period of adjustment to nemeses of death

11. Low Prioritisation of L.T.C. • Strategies cover cancer, heart disease, renal, COPD, diabetes • Osteoporosis, dementia, stroke, arthritis: tend to be omitted • Reasons • medical model, ageist, traditional ‘class system’ of disorders • mirrored by amount of research, departmental size, direct funding Underlying problem Chronic diseases are prioritised by their contribution to mortality (especially premature) rather than to disability. In an ageing population the latter is the major contribution to disease burden

12. Disability: Loss of function • Due to • genetic/developmental causes • single acquired major event • multiple acquired events/disorders • Stable • overall function constant • may otherwise be in good health • minor day to day fluctuations • or maybe slowly progressive • Unstable (common in older people) • overall function fluctuates • may not be in good health • major fluctuations often due to minor external events • Rapid rate of change superimposed on background progression

13. MEDICINE FOR OLDER PEOPLE(Geriatric Medicine) • Specialised area of Medical Services which covers the clinical, preventative, remedial and social aspects of health in older people • Function is to diagnose disease, assess disability, and take remedial action on both health and disability so as to contribute to ‘wellness’ • Aim is to restore the patient to the maximum possible health and independence, with quality of life for that individual Now ‘Specialist Health Services for Older People’ (includes Mental Health Services for Older People)

14. Negative AttitudesStrongly influenced by the presence of disability SERVICE USERS Individual expectations of health with ageing Life experiences - cohorts Role changes – bi-directional impact on individuals and society Is this going to alter with the baby-boomers? YES HEALTH PROFESSIONALS Negative attitudes towards working with older people Reasons: lack of knowledge, lack of intervention ability, lack of positive feedback, avoidance behaviour What makes a difference? - positive exposure, leadership, education/training

15. The Reversibility Gap • Lack of health as a major and integral part of ageing is • ‘over-emphasized’ in our expectations both patient and professional • not recognised as a cause of loss of function (attributed to ageing) • not recognised as frequently reversible • used perversely to avoid active and positive management of death by ignoring the decision options • Attitudes towards and perceptions of health in older people • influence health • impede rigorous diagnosis • lead to lack of effective interventions • lead to inaccurate prognoses positive & negative

16. Frailty‘Multi-system impairment associated with vulnerability to stressors’• Well-being declines• Complex needs increase• Societal and financial costs escalate (notably in year pre-death)• Health/social outcomes more difficult to align with resource use • Driver to justify changed clinical delivery Key feature in national health strategies, frameworks and guidelines. Recent studies providing tools to assess & measure effectiveness of interventions

17. Frailty is more than thisResearch is defining characteristics of frailty• Convergence between frailty and sarcopaenia• Diminished ability exists to perform practical and social ADLs• The importance of social and environmental factors especially for the old-old• Like intrinsic and extrinsic risk factors for falls it has personal (physical, cognitive) and environmental factors (social, legal, interpersonal, institutional,)• Both physical and social factors may have preventable and remediable aspects with a transitional phase • Reflected in current international criteria

18. Disease prevention Maintenance of independence Age Changing the focus of clinical treatment

19. Maori Perspectives

20. Impact Of A Maori Perspective On Population Ageing In N.Z. Society Professor Mason DurieN.Z.A.G. 2007 (derived) • Perspectives on ageing:‘elders’ not retirement • Measuring impact:contribution not cost, societal benefits • Societal assets: • Carriers of culture and standing • Guardians of the landscape and environment • Anchors for families • Models for lifestyle and risk adjustment • Bridges to the future for health and balance • Bulwarks for industry in knowledge retention, workforce, networks • Leaders of communities and nations: advocacy, reconciliation, nurture, spiritual and cultural leadership • Valuing older people:distinctive elements, enrich quality for all, consequential gains for the whole country

21. Taupaenui: Maori Positive Ageing Positive ageing is good for older Maori and for Te Ao Maori process dimension: life course approach (past, current and future) outcome dimension: universal features of health, financial security, positive relationships, housing, access to support services Features of positive ageing for Maori include: takes place within a Maori world view (although the interface with western gerontology for shared universal outcomes is instrumental to achieve that outcome) is part of a broad Maori development strategy for all ages Maori collectives have a critical role to play William J.W. Edwards: PhD Thesis Massey University 2010

22. Domains And Values Of Maori Positive Ageing Potential realised within the dynamic of Te Ao Maori and Te Ao Whanui: through ora–wellbeing, kaha-vitality, and maramatanga-enlightenment Kaitiakitanga - stewardship Whanaungatanga - connectedness Taketuku - transmission Takoha - contribution Takatu - adaptability Tino rangatiratanga – self-determination Equilibrium Adversity tempered by rewards of whanau Burdens to be lightened by inclusion Obligation balanced by privilege William J.W. Edwards: PhD Thesis Massey University 2010

23. For all our communities Indigenous knowledge v western science paradigms Enlightenment v research Different perspectives on ageing Life experiences vary intrinsically and within cultural environments Roles, respect and ageing Life meaning Urbanisation v connection with the land

24. “AnAge-friendly Cityis an inclusive and accessible urban environment that promotes active ageing” [W.H.O.] Check list: eight domains • Outdoor spaces and buildings • Transportation • Housing • Social participation • Respect and social inclusion • Civic participation and employment • Communication and information • Community support and health services

25. Challenges of Population Ageing:are not met solely by city environmental change • Ensure a basic level of financial security • Availability and accessibility of effective specialised health care, and integrated support systems in extreme old age or frailty • Maintaining wider social patterns that influence well-being • Accessing the resource of skills, wisdom and experience for the good of the wider community, region and nation • Addressing pervasive ageism in community, organisational and societal life All impact on transitions in old age

26. ‘Care and Control’ or ‘Is the Individual our Focus?’

27. Reflections On ‘Care’ • A fundamental concept, with ethical bases • relationships, social, community, cultural, religious constructs • range of intensity and delivery modes • less emotional, personal and ephemeral than ‘love’ • component of avoiding risk • Often expressed in deeds, easily prosaic • Annealed with health and welfare services • Associated language often implies ageism, paternalism, superior benefaction • Increasingly seen as a core role of governments and external statutory or corporate organisations What is the potential for global corporatisation, international and national networks, and best practice consensus to be the agents of the new neo-colonisation ?

28. The Corporatisation Of Care John Ralston Saulcommented on our society: • Only superficially based on the individual and democracy • Increasingly conformist and corporatist • Legitimacy lies with specialist or interest groups • Decisions are made through negotiations between these groups rather than with the individual • Language use obscures this reality and denies the individual the enlightenment of knowledge, which is a ‘power’ acquisition • Need to re-establish the equilibrium between the individual and these influences Strong themes shared with Foucault and Chomsky

29. Risks For Individual Colonisation[Social, biomedical, lifestyle, functional, psychological] • Relationship stress • Insecure networks or cultural infrastructure • Functional thresholds threatened • Frailty • Vulnerable self-determinism • Too many choices or information burden • Fear of ageing • Dementia • Neo-colonisation examples: • scientific colonisation: subjects used for data collection for experts who may have foreign and variant interpretation biases • ‘coca-colonisation’: cultural/sociological imperialism

30. Purposes of the Positive Ageing Strategy • To promote positive ageing across a broad range of areas • To improve opportunities for older people to participate in the community in ways that they choose • To enable continued productivity in older age noting the benefits for all • To change attitudes about ageing & older people as the first step to promoting positive & productive ageing (this includes attitudes towards death)

31. Health of Older People Strategy THE VISION Older people participate to their fullest ability in decisions about their health and wellbeing and in family, whanau and community life. They are supported in this by co-ordinated and responsive health and disability support programmes. Anticipates: connect, communicate and collaborate

32. Ageism & Group Tensions

33. Population Ageing and Generational Relationships • Potential increase in intergenerational conflict e.g. spending priorities on education and within health • Decreased intergenerational wealth transfer • especially from housing • care cost for ‘sandwich generation’ • annuities may return to bi-lateral favour • reverse mortgages • Changes in traditional inter-generational culture e.g. baby boomers / rock generation • Employment contracts and practices e.g. phased retirement, ageism v equal rights v economical need • Changes in migration patterns and community mix: fiscal, life style, service access, urbanisation impacts

34. ‘New Societal SupportCharacteristics’

35. Rebalancing ‘The Corporatisation Of Care’ • Clarify what we mean by self determination, individualism and democracy • Gain consensus about proxy care for the ‘life that is’ • Make these realities central to our lives and society • Identify ideologies in order to control them and re-direct benefit • Reconnect language to reality • Shared information between originator and subject • Respect for the ‘trappings’ of self-identity • Changes to support frameworks with ‘follow the money follow the power’ insights (personal budgets, resource pools, NGOs) “If social care services are to transform people’s lives, they must be based on a deeper understanding of the nature of duty and obligation inherent within them - the invisible glue in services and support” JRF 2008

36. Prevention Of ‘Ageing’ ‘Connectivity and Support’ versus ‘Loneliness’ • Social networks:people for empathy • Technologies:mobility support, cognitive support, monitoring, tele-care. Balance the risk of imbalanced power • Individual is the unit of activity • Humans need to be needed and affirmed • Smart innovation:globalisation and investment not successful alone, green exchange, range of assets, social construction not just services and materials

37. Prevention Of ‘Ageing’ • Cultivate certain personality traits for longevity Not neurotic (tense, anxious, depressed, smoke), higher cognitive ability,learn later in life, conscientious, agreeable,outgoing. Role of genes & inflammation Health and socioeconomic status blunt low IQ but not neuroticism. • Hopes Having a higher purpose in life strongly related to longevity Treat cause of ill health not just quick fix Active ageing not ‘physical’ activity alone • Avoid chronic disorders: CVD, diabetes, good bones, pick your parents, physically active, eat well

38. ‘The Elephant’

39. Dementia: the ‘elephant in the room’ ‘Taking Care’: Ethical Care Giving in Our Ageing Society. (The President’s Council on Bioethics Washington D.C.2005) • A focus on rising dementia prevalence; capacity to care impacts on ethical practice • Covers tensions between ethics of equality v utility v quality v autonomy (U.S. aspect) • Stresses inadequacies of advance directives and living wills: not informed consent; prior wishes v current welfare; critical interests v experiential interests • Advocates for advanced care planning and proxy directives; which also endorse and strengthen our living networks • Always seek to serve (benefit) ‘the life the patient has’ (in the current) • ‘never seek death as a primary means of relieving suffering’ • ‘not obliged to elect life saving treatments’ • ‘when these impose undue additional burdens on the life that is’ or • ‘interfere with the comfortable death of a person proximately irretrievably dying’ • dilemmas exist around extending a burdensome life, where the life extending treatment is not burdensome in itself In hard cases formal ethical advice may be influenced by the prevalent religious ethical framework; which in multicultural societies may not be shared

40. Community Care • 70% of people with dementia live in their own homes • 50-90% of residential clients have dementia • Living with someone keeps you out of residential care • Risk v safety v choice issues • Conflicted motivators • ‘Advanced Care Planning’ advocates for ultimate clinical risk choice • Various supports available (if accepted) • Technology becoming available (if funded) • Social infrastructure must support

41. Alternative ways to avoid dementia • Co-habit with partner in mid-life (50 yr) and stay in partnership → low risk • If widowed or divorced but get another partner later → 3 x risk • If still alone→ 7.7 x risk (21 year follow-up) • Widowed or divorced without new partnerand with apolipoprotein e4 allele → very high risk: [Suggests reverse causation theories are less likely e.g. sub-clinical dementia affecting social networks]

42. Values & Ethical Frameworks

43. AGEING IN PLACE • Underlying concept of Positive Ageing Strategy & Health of Older People Strategy • Implies getting frail and/or dying in place as an integral part of positive ageing • Overwhelmingly the first choice of people • Challenged by many systems, progress being made • Unnatural environments beget unnatural relationships and processes (loss ofnormalisation) • Also underpinned by the other concept of ‘continuum of care’

44. Threats to Existing Ethical Frameworks • Dementia and frailty influencing community perception of ‘human value’ • Conflicting perceptions on affordability of ‘non-productive citizens’ • Exacerbating influence of economic tensions • Influence of global values on consumer wants –products and health • Competition for scarce health dollar • Local carer work force shortages influence end of life quality versus quantity debate • Less homogenous cultural and religious ethical consensus • Increasing value placed on the cognitive rather than the physical life • Diminished individualism within the group or community or corporate Outcome: lower value placed on less than ‘fully functioning individuals?

45. Curative v Palliative Nonsense • Most health problems are not curable - with the exception of infections and conditions responsive to a surgical approach • They may be prevented, managed or ameliorated over a long period of time, through a range of interventions and health determinants, well before they reach a terminal phase • Traditional distinction between ‘curative’ and ‘palliative’ therapies is blurred and often solely a matter of phasing • Many people in developed countries will live for some time with an eventually fatal, serious chronic condition(s) which impacts on their lifestyle and/or life expectancy well before death • This can be called a ‘life-limiting illness’. Due to continuing increases both in life expectancy and longevity, death is becoming gradually more restricted to the older person • This increases the societal and personal impact of premature death

46. Integrating Curative and Palliative Therapies • ‘Palliative care’ is not confined to the end stages of an illness, includes other therapies intended to manage interim complications and/or prolong life. • Increasing use of the term ‘palliative approach’ for these circumstances.As applicable and effective treatment options become exhausted, normal health management gradually incorporates this ‘palliative approach’ until stage of dying is reached. • Both a ‘palliative approach’ and ‘palliative care’ do not preclude interventions to maintain or improve function, including rehabilitation, as optimal achievable independence may never have been so precious.

47. An Expanded Paradigm • The core competency and knowledge base of physicians qualified in Geriatric Medicine specifically includes that of a palliative approach to the management of medical and other conditions in older people, as well as bereavement and role loss. • For older people this expertise sits at the interface between generalist and specialist palliative services.

48. Uneasy Clinical Bedfellows • Acute v rehabilitation nursing approaches • Behavioural disorders v the non-challenging • Intensive intervention to prevent death v facilitated dying • Driver for ARC placement

49. Opportunities • Psychological considerations supported • Physical needs managed • Life review • Coping • Growth • Completion and acceptance • Transcendence

50. Current Situation • Hospitals are struggling to accept a short remaining life span or death as a apt outcome: • outdated models of service and care • lack of knowledge about the frail, complex disease in older people, and diseases with a longer recovery period • lack of ability to assess reversibility • in an early stage of knowledge about managing dying • ‘combative curative’ environment – ‘death as a failure’ summates with sense of failure in inability to intervene in functional decline thus producing avoidance behavior • New paradigm challenges: • traditional funding streams • segregation of the differing aptitudes, interests, and skills necessary for acute and curative care and disease modification Dying care paths may be used inappropriately or be underused