Members Advisory Forum

Welcome Remarks

Henry Simmons, Chief Executive

Early Diagnosis Campaign

How to start those difficult conversations &

what would a campaign look like?

Chris Lynch, Deputy Director, Communications & Marketing

Let’s talk about dementia!

1) From your own experiences: How can we encourage

people to initiate the difficult conversations – especially

the ‘worried about your memory’ conversation? What

works, where, when and who?

2) It’s a busy, noisy world - full of marketing messages.

How can we get people’s attention? If it was you – how

would we get your attention?

Questions:

Members’ Advisory Forum in April 2014.

Barriers to getting a diagnosis

•Fear

•Stigma

•Perceptions of dementia

•Lack of knowledge of illness or help available

•Response from professionals

Let’s talk about dementia!

Social marketing research.

Changing Attitudes to Dementia Dr Nicholas Jenkins - University of Edinburgh:

Recommendations: 1)Involve people with a diagnosis, carers, partner, family, friends, plus professionals and experts. Case studies.

2)The campaign should seek to promote a positive message, emphasising what is possible following diagnosis, rather than highlighting the symptoms or ‘warning signs’ of dementia.

3)Disseminated information via a wide range of channels, including: local newspapers and websites, local TV & radio, websites, buses and leaflets.

4)Care should be taken to ensure outputs from the campaign are accessible to people from BME communities. This includes translation into key BME languages (e.g. Urdu, Hindi, Cantonese) and dissemination through local BME channels (e.g. Awaz FM)  

Let’s talk about dementia!

Lots of opportunities.

Michael Caine’s character:

“How you would resolve the staging difficulties inherent in a

production of Ibsen's Peer Gynt?”

Julie Walter’s character:

“do it on the radio"

Educating Rita

“Do it on the radio!”

“Do it on the radio!”

Bauer Radio Group:

Clyde 2

Forth 2

Moray Firth Radio (Inverness, Highland, Moray)

Northsound (Aberdeen/shire)

Radio Borders

Tay AM (Dundee, Perth, Kinross, Fife)

West FM (Ayrshire)

West Sound (Dumfries & Galloway)

Lots of opportunities.

1) From your own experiences: How can we encourage

people to initiate the difficult conversations – especially

the ‘worried about your memory’ conversation? What

works, where, when and who?

2) It’s a busy, noisy world - full of marketing messages.

How can we get people’s attention? If it was you – how

would we get your attention?

Questions:

Break

Paying for care

Jim Pearson, Deputy Director, Policy

‒ NHS healthcare

‒ Local Authority services

‒ Voluntary sector providers

‒ Private sector providers

‒ Social Security Benefits – (e.g. Attendance Allowance, Disability Living Allowance, Personal Independent Payment)

‒ Unpaid care

Mixed economy of care in Scotland

Economic Impact of Dementia in Scotland

Source: Dementia UK, 2014

‒ Health Care (free at point of delivery)

‒ Social Care (subject to charges)

‒ Two separate charging frameworks• Non residential care• Residential Care

Paying for care

‒ Sect 87 Social Work (Scot) Act 1968 makes provisions for local authorities to charge for social care

• Charges must be reasonably practical to pay • Must not exceed the actual cost of providing the

social care

‒ Free personal and Nursing Care ‒ Convention of Scottish Local Authorities (COSLA)

Guidance

‒ 32 Local Authorities = 32 Charging policies

• Lack of transparency – many variables

Non Residential Care Charging

Local Authority Charging Taper variations

‒ Aberdeen City 67%

‒ Aberdeenshire 100%

‒ Angus 66%

‒ Argyll & Bute 75%

‒ Clackmannanshire 75%

‒ Dumfries & Galloway 55%

‒ Dundee City 65%

‒ East Ayrshire 60%

‒ East Dunbartonshire 50%

‒ East Lothian 45%

‒ East Renfrewshire 60%

‒ Edinburgh City 31.89

‒ Eilean Siar 50%

‒ Falkirk 100%

‒ Fife 50%

‒ Glasgow City 50% (100% for older people)

‒ Highland 50%

‒ Inverclyde 25%

‒ Midlothian 70%

‒ Moray 100%

‒ North Ayrshire 40%

‒ North Lanarkshire 50%

‒ Orkney Islands 15%

‒ Perth & Kinross 100%

‒ Renfrewshire 85%

‒ Scottish Borders 24%

‒ Shetland Islands 30%

‒ South Ayrshire 25%

‒ South Lanarkshire 50%

‒ Stirling 75%

‒ West Dunbartonshire 50%

‒ National legal framework for charging [National Assistance (Assessment of Resources Regulations) (Scot) 1992]

‒ Charging for residential accommodation guidance (CRAG)

‒ These are national rules – setting out how local authorities treat an individual’s income and capital (including heritable property) in financial assessments• Counted in full • Fully Disregarded• Partially Disregarded

Care Homes

‒ Standard rates for public funding:• £587.00 with nursing care• £499.38 without nursing care

‒ Self funding rates• Between £650 & £800 on average

‒ Free personal and nursing care • £169 for personal care (people aged 65 +)• £77 for nursing care

• £246 (combined total)

‒ Capital Limits :• Lower limit £16,000• Upper limit £26,000

Care Home Charges

‒ Health and social care integration

‒ Self Directed Support

‒ Review of NHS continuing health care

‒ Residential Care Task force report

‒ Dilnot Report – UK Care and Support Bill

‒ Non-residential care charging guidance review

‒ Review of national charging for residential care charging guidance

‒ Welfare reforms – social security benefits

Current Landscape

‒ £72k cap on life time care costs (Dilnot recommended £35k)

‒ People will be expected to pay around £12,000 a year towards their general living costs if they can afford it

‒ The State will be responsible for:• any further care costs once an individual reaches the

£72,000 cap• financial help to people with their care and/or general

living costs, if they have less than around £17,000 in assets, and insufficient income to cover care costs.

Dilnot Report & Care and Support Bill (UK)

The Future of Residential Care for Older People in Scotland (recommendations)

‒ Extra-care Housing

‒ Short-term Residential Intermediate Care (step up step down)

‒ Specialist Residential

‒ Accommodation, hotel, care, leisure and recreation costs should be separated.

‒ Financial modelling work to ascertain the cost effect of raising capital limits in Scotland

‒ Free Personal and Nursing Care contributions should be reviewed

‒ Financial modelling to establish the costs of implementing a national commitment to pay the Living Wage in the care sector.

The Future of Residential Care for Older People in Scotland (recommendations)

NHS Continuing Care

‒ NHS Continuing Healthcare is a package of health care that is arranged and fully funded by the NHS

‒ CEL 6 (2008) sets out assessment and eligibility criteria

‒ ISD Annual Census ‒ NHS Continuing

Healthcare is currently under review

‒ Key recommendations • NHS CHC should be replaced with the term "Hospital

Based Complex Clinical Care" and only provided in facilities wholly funded and managed by the NHS.

• Three month multi disciplinary team assessment after admission to hospital (excluding delayed discharge), and ongoing review every three months.

• Those currently receiving NHS continuing healthcare should not be financially disadvantaged.

Independent Review of NHS Continuing Healthcare

Influencing improvement throughout the illness ‒Promoting earlier diagnosis‒Improving Diagnosis (rates and experience)‒Post Diagnostic Support guarantee – 5 Pillars ‒Integrated & coordinated community support – 8 Pillars‒Advanced Dementia

Alongside work on ‒Improvements in health care ‒Dementia friendly communities/ dementia friends

Alzheimer Scotland’s contribution

1.What should people with dementia pay for, or not pay for, in an integrated health and social care system?

2.How should care and support be funded for people with dementia in Scotland?

3.Almost half of the current cost of care for dementia in Scotland is met by unpaid care – how can this gap be closed and carers better supported?

Questions

Lunch

Our Research Activity

Maureen Thom, Information Manager

• Scottish Dementia Research Consortium

• Alzheimer Scotland Dementia Research Centre,

University of Edinburgh

• Alzheimer Scotland Centre for Policy and Practice,

University of West of Scotland

• Building relationships with Universities across Scotland,

sponsoring doctoral training programmes and funding

research projects

Aiming for maximum impact

• Bringing together Scottish based dementia researchers

from all disciplines to promote collaboration and co-

ordination

• Represent Scottish research interests at UK level and

Internationally

• Communication with public about dementia research

taking place in Scotland

Scottish Dementia Research Consortium

• Commission and build a balanced portfolio of scientific

and clinical research

• Attract external dementia research funding

• Brain Tissue Bank

Website: www.alzscotdrc.ed.ac.uk

Alzheimer Scotland Dementia Research Centre

Aims to advance dementia policy and practice through:

•Education

•Research and

•Social enterprise

Website:

www.uws.ac.uk/research/research-institutes/health/alzheimer-scotland-centre-for-policy-and-practice

Alzheimer Scotland Centre for Policy &

Practice, University of West of Scotland

• Building relationships with universities and dementia

researchers across Scotland

• Sponsoring doctoral training programmes (PhDs)

• Funding research projects

Our additional research activity

1. What are your views on the approach outlined today?

What comments would you like to make on our

research activity?

2. The G8 Dementia Summit placed the priority for

research on developing a cure or disease modifying

treatment for dementia - what do you consider to be the

priority/s for dementia research?

Questions to Membership

Closing Remarks

Henry Simmons, Chief Executive

Members Advisory Forum