Opportunities to support people on their journey with dementia Joanna Lenham June 2011

What does SCIE do?  Independent national charity  Identify and spread knowledge about good practice in social care – adults, children, families in the UK  Support delivery of transformed personalised services - practitioners, managers & sector leadership

What does SCIE do?/2  Ensure experience and expertise of people using services reflected in our work  Increasingly, how health and social care work together to enable best outcomes.

Dementia: policy importance  National Dementia Strategy (2009)  Quality Outcomes for people with dementia (2010)  National Dementia Declaration and Dementia Action Alliance (2010)  APPG – cost-effectiveness in dementia care (2011)  Dementia and anti-psychotics – call to action (2011)

Dementia: personal importance ‘Treat me like a person and help me stay independent. Respect my wishes and remember that this is a disease over which I will have little control...Accompany me on my journey as a “travelling companion” as my world retreats further into long-term memories’

The journey with dementia ‘Windows of opportunity’ tool – 4 stages on the journey… ….awareness of dementia ….identifying dementia ….living well with dementia ….end of life care

Identification  Awareness that there is a problem  Seeking help  Assessment and diagnosis  Initial intervention

From awareness to identification  Will being given a diagnosis help this person right now?  Will it help their family or carers?  What impact will it have on the wider health and social care community?  What can we do to encourage people to seek help at the right time?  How can we support this person in the assessment and possible diagnosis of dementia?

Anna’s experience... ‘It was one thing to know in private that my brain had become unfaithful, but it was frightening to learn that my brain’s private betrayal had become publicly observable’

Identifying dementia: E-learning

The Open Dementia E-learning Programme Provides a general introduction to dementia and the experience of living with dementia: Module 1 What it is and what it isn’t Module 2 Living with dementia Module 3 What causes dementia Module 4 Diagnosis and who can help Module 5 Common difficulties and how to help Module 6 The emotional impact of dementia Module 7 Positive communication

Identifying dementia: BME communities Research briefing 35: BME people with dementia and their access to support and services  UK evidence base limited  Numbers increasing, but awareness lower  Different information and outreach workers  Care staff wish for more training  Carers reluctant to seek help

Living well with dementia  Diagnosis made  Range of support available for individual and carer/family  Focus on continuing to live a fulfilling life  Care staff to come alongside and support

Where the need for support emerges  Are there any barriers that are preventing this person from accessing universal services?  How do we ensure that a lack of help at an earlier point does not create a greater level of need at a later time?  What abilities or inner strengths can we help this person to draw on?  What targeted interventions can we offer to maintain this person's current level of independence?

Anna’s experience.... ‘Having the carers come was something I would not choose, and the busybodies reinforce the sense that my choices are becoming less my own. I don’t want to be case-worked. I just want to look out of the window if I want to’

Dementia Gateway

End of life care  Recognising that dementia is a terminal illness  Providing the right support to meet the person’s needs near death  Ensuring that their carers are well supported beyond their death

Transition to end of life care  What can we do to encourage people to state their wishes about end of life care while they are able to?  How do we support carers and families through and beyond the point at which delivering care ends?

Anna’s experience... ‘...all I can do is say that I want my husband to be with me and I want to be at home...I am adamant that I want to die at home and not in hospital’

Personal resources  Encourage and support people to use their personal resources to boost their resilience  Nurture carers’ resilience as their willingness to continue caring is a powerful factor in predicting whether or not a person will be able to stay at home  Public health messages, life story work and a strengths-based approach can all help strengthen personal resources.

Dementia: personal importance ‘Treat me like a person and help me stay independent. Respect my wishes and remember that this is a disease over which I will have little control...Accompany me on my journey as a “travelling companion” as my world retreats further into long-term memories’

Web addresses pportunity/index.asp mentia/index.asp efing35/index.asp dex.asp id=6ddc31cf-a355-46cf-9fce-2685b51272d3