The Snakes

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The Snakes Ladders of Dementia Care

• Jim Jackson
• Chief Executive
• Alzheimer Scotland
• 2 June 2008

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Introduction

• Dementia care in Scotland is getting better.
• But
• Whistlestop tour of the experiences people with
  dementia and their families and the policies
  designed to help them.

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Diagnosis (1)

• Accurate diagnosis can help people with
• dementia come to terms with their illness
• In England only 33 of people with dementia
• receive a diagnosis
• In Scotland 50 of people with dementia
• receive a diagnosis
• In Scotland 50 of people with dementia
• do not receive a diagnosis

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Diagnosis (2)

• Dementia is a national clinical priority
• NHS Boards have to increase the
• proportion of people diagnosed with dementia by
  33 over 3 years

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Treatment

• NICE NHS Quality Improvement
• Scotland do not recommend the Alzheimers
• disease drug treatments in the early stages
• of Alzheimers disease
• The Scottish Intercollegiate Guidelines
• Network (SIGN) does recommend the
• use of Alzheimers disease drug treatments
• in the early stages of dementia
• Most old age psychiatrists are following the
• SIGN guidelines

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Post diagnosis support

• 47 of Scottish carers want
• more practical information
• 32 of Scottish carers want more
• medical information
• Few recently diagnosed people
• with dementia are offered or receive
• comprehensive post-diagnosis support
• The Scottish Government has
• allocated 600,000 for pilot projects

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Attitudes

• People treat you like a child. Someone said to
  me
• Come along in the car and Ill take you out and
• Ill bring you a sandwich.
• I thought whats happened to me?
• People said they would sit me out in the
• garden as if I was a toy. The attitude of
• people towards us takes away our confidence
• Member of the Scottish
• Dementia Working Group
• 78 of people are generally caring and
• sympathetic to people with dementia
• MRUK (2008)

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Dementia Support Services
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Community Services

• 25 of people requiring community care
• receive day care
• 64 of people requiring day care do not
• receive it 1
• 22 of people with dementia requiring
• community care receive home care
• 60 of people with dementia requiring
• home care do not receive it 2
• 12 of people with dementia living in
• the community received short break or
• respite care
• 1 based on the level of day provided by City of
  Glasgow Council
• 2 based on the level of home care provided by
  City of Dundee Council

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Experience

• When I contacted the social work
• department the response was quick
• and the service of excellent
• Daughter of person with dementia
• When I first came to this team, we
• did not have a waiting list and now at
• times we have a waiting list of around
• 40 people with dementia
• Care Manager

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Experience (2)

• I would have gone downhill
• without day care
• Person with dementia
• My husband would benefit from
• support to enable him to go out and
• do activities such as bowling he does
• not require actual day care but would
• love access to social activities and
• mens company
• Wife of person with dementia

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Experience (3)

• We look at what people are still
• able to do for themselves and
• encourage them to do it rather than
• taking over
• Care Manager
• Home care workers dont have
• enough time allocated to encourage
• independence so they do things
• which the person may be able to do
• with support
• Carer

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Experience (4)

• I did not know we could ask for
• Breaks. No one has mentioned
• respite
• Carers
• The lack of overnight care is one
• of the biggest failures of social
• work provision in Scotland
• Care Manager

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Experience (5)

• My husband would like respite
• care but the only current respite
• available is in care homes which
• is not suitable because he is too
• young
• Wife of person with dementia
• My last short break did not help
• as there was a limited range of
• activities
• Person with dementia

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Experience (6)

• Home care workers are very good or
• very poor, there is no quality standard.
• Most carers are good but have little
• training and understanding of dementia,
• some are scared
• Carers
• We are not in a position to be
• developing services we are struggling
• to keep out heads above water
• Care Manager

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Experience (7)

• I have just been told my care manager
• needs to reapply for funding for my
• 2008-09 respite and I will almost
• certainly lose part of my allowance
• Wife of person with dementia
• If you cannot provide a service for everyone
• you provide a service for those who need it
• most it makes sense but it represents
• another chipping away at the service we
• provide
• Care Manager

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Free Personal Care

• Independent Review of Free Personal
• Nursing Care in Scotland made 12
• recommendations to stabilise and
• address difficulties in funding and
• variability in provision as well as
• address medium or longer term issues
• The Scottish Government has agreed
• to fund the shortfall in funding
• The Scottish Parliament voted against
• continuing charges for food preparation
• which eight councils are levying

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Respite Care

• Scottish Governments commitment
• to an extra 10,000 weeks of respite
• care by 2011
• But it is for all client groups and
• almost certainly will not be enough

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Long Term and Palliative Care

• 4,000 people with suspected
• dementia in care homes who
• have not received a diagnosis
• Further 8,000 people in care
• homes who probably should
• have been diagnosed with
• dementia

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Long Term and Palliative Care (2)

• In adult services, care homes for
• older people gave the Care
• Commission the most significant
• cause for concern
• Most of the complaints that the
• Care Commission uphold or
• partially uphold are about care
• homes for older people.

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Long Term Palliative Care (3)

• Beyond barriers, Alzheimer Scotlands campaign to
  improve palliative care
• will be working with 50 care homes
• and training 100 care staff as
• dementia champions and involving
• a similar number of supporting relatives/carers

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And Finally

• NHS Boards will have to have their Integrated
  Care Pathways for people
• with dementia accredited
• The Minister for Public Health has established a
  Dementia Forum to
• advise her on future improvements
• to dementia policies
• We have begun the journey to
• better dementia care in Scotland

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The Snakes Ladders of Dementia Care

• Jim Jackson
• Chief Executive
• Alzheimer Scotland
• 2 June 2008