SCOTLAND’S DEMENTIA STRATEGY AND PERSONALISATION

Scotland’s National Dementia Strategy The key points from 2010 document

Dementia Strategy Published in June 2010, it focuses on two key areas: Providing better support and information to people with dementia and their carers after diagnosis Providing better support and care in hospitals (including finding alternatives to admission and improved planning for discharge) Why? Because they will bring immediate benefits to people with dementia and their carers and improve efficiency and quality of the care system

Dementia Strategy A further eight priorities for improving care pathway for people with dementia and their carers are identified: Common standards of care for dementia A definitive skills and knowledge framework for dementia Transformational change involving all health and care sectors Improved management and outcome information Continued work on diagnosis Better response to challenging behaviour Accelerated implementation of Dementia Integrated Care Pathway Continued action to support dementia research

Dementia Strategy The strategy is designed to tackle five key challenges: The fear of dementia that means people delay in coming forward for diagnosis Poor or non-existent information and support after diagnosis for those with dementia and their carers Poor outcomes in general healthcare services A lack of dignity and respect for people with dementia and their carers Inadequate support for family members and those who care for people with dementia

Dementia Strategy Action already taken: Alzheimer Scotland have 19 Dementia Advisers in 18 local authorities They fund three Dementia Nurse posts in NHS Lothian, NHS Borders and NHS Ayrshire and Arran – and have launched a £1.5 million appeal to place a nurse in all 14 health boards Dementia has been established as a national clinical priority by the Scottish Government New self-directed support legislation introduced to enable more people with dementia to have control of their care funds The Scottish Dementia Forum, including people with dementia and carers, has been created and meets regularly

Dementia Strategy The next steps The first annual report on the progress of the strategy will be published in June 2011 by the Dementia Strategy Implementation and Monitoring Group This Strategy has long-term objectives, but there is an immediate focus on action over the next 3 years A revision of the Dementia Strategy is due to be completed by June 2013

Dementia: By NHS Board Scottish Borders Dumfries & Galloway FifeForth Valley Lothian _ No people with dementia Population of area Est. % with dementia 1.6% 1.3%1.2%

Dementia in Scotland (Alzheimer’s Scotland 2007) Currently 71,000 in total - 60% in community - 40% in institutional (long stay) care Projected to rise to 127,000 by 2031 (Alzheimer’s Scotland 2010)

PERSONALISATION AN INTRODUCTION

Starting with the Person Personalisation means thinking about public services and social care in an entirely different way – starting with the person rather than the service. It will require the combined transformation of adult care. Julie Jones, Chief Executive, SCIE

What support do people with dementia need? Information about their illness and what's available The tools to become active in their own planning and decision making Control enabling them to take decisions when they have capacity to make decisions and plan ahead Knowledge of the allocated budget to their care Ability to control their budget to meet their personal needs and understanding the options available to them (e.g. self directed support, direct payments purchasing services or personal assistants)

What is Personalisation Begins with the person, not the service Recognises the person’s strengths, preferences, networks of support Individual is best placed to make decisions about their life

What is Personalisation Accessible information and advice Irrespective of whether self funded or publicly funded It’s about giving people choice and control over their lives

What Personalisation is NOT A completely new idea Just about giving people individual budgets Only for people eligible for Council funding Or those needing traditional services only

What Personalisation is NOT “Importantly, the ability to make choices about how people live their lives should not be restricted to those who live in their own homes. It is about better support, more tailored to individual choices and preferences in all care settings” (DH, 2008a,p5)

What it does mean Finding new collaborative ways of working and developing local partnerships, which produce a range of services for people to choose from and opportunities for social inclusion Tailoring support to meet individual needs Recognising and supporting carers in their role, while enabling them to maintain a life beyond their caring responsibilities.

What it does mean Access to universal community services and resources – a total system response Early intervention and prevention so that people are supported early on and in a way that’s right for them

Some Common Terms Person centred planning Person centred care Person centred support Independent living Self directed support

Personalisation Implementing Personalisation

The experience of dementia Consider Trying to make sense of an increasingly unfamiliar world Unable to access memory Being disorientated – time, place, person Unable to respond to emotional demands Unable to verbalise your needs Loss of strengths – weaknesses come to the fore Loss of identity and control over your life Being ignored, talked over or treated as stupid Loss of coping skills

Implementing Personalisation - Environment Does it make sense to the person Does it lack crucial information Signs and cues Areas of importance not highlighted Inappropriate lighting Too much noise and conflicting stimuli Patterned carpet and shiny flooring Mirrors

Communication tips REMEMBER – challenging behaviours are not always a problem for the person with dementia For the person with dementia – their behaviour often makes perfect sense to them Due to communication difficulties the behaviour of people with dementia should be seen as an expression of need

Communication tips DON’T Try to communicate when there are distractions Use long complicated sentences (or jargon) Talk about doing something long before you do it Assume that pronoun’s like he, she or it will be clear to the person Keep repeating something if you are misunderstood Use gestures that could be seen as threatening Assume that the person does not understand

Communication tips DO: Seek out a quiet area Identify yourself by name Speak slowly and clearly – no need to shout Ensure that only one person speaks at a time Use other cues and gestures to maximise understanding Give time and remain unhurried Listen and give the person your full attention

FINAL POINT The person with dementia can’t adapt to us – we need to adapt our social, clinical and structural environment around the person. At the very least – don’t disable the person further!

THANK YOU