Dementia Strategy Consultation Key Findings and Actions

KEY FINDINGS AND FOLLOW UP ACTIONS

1.0 Improving public and professional awareness and understanding of dementia.

2.0 Good-quality early diagnosis and intervention for all.

3.0 Good-quality information for those with diagnosed dementia and their carers

4.0 Enabling easy access to care, support and advice following diagnosis

5.0 Development of structured peer support and learning networks.

6.0 Improved community personal support services

7.0 Implementing the Carers’ Strategy for people with dementia

8.0 Improved quality of care for people with dementia in general hospitals.

9.0 Improved intermediate care for people with dementia

10.0 Considering the potential for housing support, housing-related

services and telecare to support people with dementia and their

carers

11.0 Living well with dementia in care homes

12.0 Improved end of life care for people with dementia.

13.0 An informed and effective workforce for people with dementia.

14.0 A joint commissioning strategy for dementia

and of how systems are working for people with dementia and their

15.0 Improved assessment and regulation of health and care services

carers

16.0 A clear picture of research evidence and needs

17.0 Effective national and regional support for implementation of the

Strategy

1.0 Improving public and professional awareness and understanding of dementia.

Public and professional awareness and understanding of dementia to be improved and the stigma associated with it addressed. This should inform individuals of the benefits of timely diagnosis and care, promote the prevention of dementia, and reduce social exclusion and discrimination. It should encourage behaviour change in terms of appropriate help-seeking and help provision.

Follow up actions

1.1 A wide range of public health / health promotion initiatives

1.2 Older Peoples’ Active Life Group (OPAL) – formerly the OP NSF Standard 8 group which has been re-launched to drive forward key policy documents that aim to extend healthy active life

1.3 Local and national Alzheimer Society campaigns

1.4 Successful ‘Let’s Talk About Memory’ events

1.5 Development of [primary care] Dementia Academies

1.6 Community engagement and building supportive social networks through ‘Memory Café’s, support and education groups and community fundraising

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2.0 Good-quality early diagnosis and intervention for all.

All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment; an accurate diagnosis sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis. The system needs to have the capacity to see all new cases of dementia in the area.

Follow up actions

2.1 Early diagnosis and intervention incorporated into Steps 1 & 2 of ER Stepped Dementia Care Model and option appraisal for operationalising this service has been competed

2.2 Hull Memory Clinic has developed clinical expertise and is undertaking national research in early psychosocial interventions

2.3 Uni-disciplinary ‘Memory Clinics’ incorporated into some out-patient clinics for example Dr A. Leigh and Dr A. Pierce

2.4 Clinical Neuroscience Centre at the University of Hull offering diagnostic and monitoring, education and research including early detection and interventions

2.5 Development of a local dementia care pathway

2.6 Development of a local care pathway for people with learning disabilities and dementia

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3.0 Good-quality information for those with diagnosed dementia and their carers

Providing people with dementia and their carers with good-quality information on the illness and on the services available both at diagnosis and throughout the course of their care.

Follow up actions

3.1 Information resources available through the Alzheimer’s Society

3.2 Provision of education and support groups for caregivers

3.3 Individualised advice booklets produced in the Hull Memory Clinic –

3.4 ½ day ‘Understanding Memory’ workshops for people with cognitive impairment (MCI and dementia) and their families provided within the Hull Memory Clinic –

3.5 STREAM interactive television service, broadcasting to PCs, set top boxes and, soon, mobile phones throughout Hull giving individuals a personalised way of accessing local information and services

3.6 Plans to develop an information resource for younger people with dementia and people with Huntington’s disease with involvement from service users and carers

3.7 Hull & ER Younger Peoples’ Club – a bi-monthly support, education and campaigning group for younger people with dementia and their families run by Alzheimer’s Society, Hull & East Riding Branch and HMHTT

3.8 ‘Don’t Make The Journey Alone’ booklet by the Scottish Dementia Working Group (SDWG)

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4.0 Enabling easy access to care, support and advice following diagnosis

A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.

Follow up actions

4.1 The Alzheimer’s Society, Hull & East Riding Branch have applied to become a development site for the Dementia Advisor role within the national Alzheimer’s.

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5.0 Development of structured peer support and learning networks.

The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services.

Follow up actions

5.1 Supportive social networks being developed through ‘Memory Café’s, support and education groups and community fundraising within the local Alzheimer’s Society Branch

5.2 The weekly Ladies’ Group run by the Hull Memory has demonstrated positive clinical outcomes.

5.3 The local bi-monthly Younger Peoples’ Club and other support and campaigning groups for younger people with dementia such as the PROP Group in Doncaster and the Scottish Dementia Working Group can be used as models of good practice – contacts via Janet Woodhouse

5.4 Drawing from the experience and good practice gathered through the Involve People with Dementia Project – key contact Janet Woodhouse

5.5 Click here to view the Strengthening the Involvement of People With Dementia Toolkit (CSIP, 2007).

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6.0 Improved community personal support services

Provision of an appropriate range of services to support people with dementia living at home and their carers. Access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Accessible to people living alone or with carers, people who pay for their care privately, through personal budgets, or through local authority-arranged services.

Follow up actions

6.1 Specialist dementia home care services in other areas of the country (e.g. Sunderland previously visited by Janet Woodhouse)

6.2 Well established dementia care training for local authority residential and home care staff run by Esme Moniz-Cook

6.3 Findings of previous CPN Caregiver study which enables practitioners to better target vulnerable caregivers and specify appropriate interventions

6.4 Holistic assessment process including family assessment tool and measures adopted within the Hull Memory Clinic

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7.0 Implementing the Carers’ Strategy for people with dementia

Family carers are the most important resource available for people with dementia. Active work is needed to ensure that the provisions of the Carers’ Strategy are available for carers of people with dementia. Carers have a right to an assessment of their needs and can be supported through an agreed plan to support the important role they play in the care of the person with dementia. This will include good-quality personalised breaks. Action should also be taken to strengthen support for children who are in caring roles, ensuring that their particular needs as children are protected.

Follow up actions

7.1 Carers Information and Support meetings run on a quarterly basis for ‘Carers’ Champions’ across

7.2 Campaigning role of the Younger Peoples’ Club for age appropriate day services, respite and residential facilities

7.3 Hull & East Riding Carers’ Centres

7.4 Admiral Nursing Services around the country - a specialist nursing field, developed and promoted for dementia, which focuses on meeting the needs of carers and supporters of people with dementia

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8.0  Improved quality of care for people with dementia in general hospitals.

Identifying leadership for dementia in general hospitals, defining the care pathway for dementia there, and the commissioning of specialist liaison older people’s mental health teams to work in general hospitals.

Follow up actions

8.1 Need for local specialist liaison older people’s mental health team incorporated into H&EY Hospitals Mental Health Strategy – an initiative being led by Steve Knight, Assistant Director of

8.2 Dr John Bestley and Dr Richard Smith have a specialist interest in older peoples’ mental health liaison

8.3 Previous piloting of a specialist liaison older people’s mental health service

8.4 Patient Passports for dementia care to be piloted locally by HICA

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9.0 Improved intermediate care for people with dementia

Intermediate care which is accessible to people with dementia and which meets their needs.

Follow up actions

9.1  Memory Clinic Nurse has previous secondment into intermediate care service

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10.0 Considering the potential for housing support, housing-related services and telecare to support people with dementia and their carers

The needs of people with dementia and their carers should be included in the development of housing options, assistive technology and telecare. As evidence emerges, commissioners should consider the provision of options to prolong independent living and delay reliance on more intensive services.

Follow up actions

10.1 Specialist interest and links with LA telecare provision

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11.0 Living well with dementia in care homes

Improved quality of care for people with dementia in care homes through the development of explicit leadership for dementia care within care homes, defining the care pathway there, the commissioning of specialist in-reach services from community mental health teams, and through inspection regimes.

Follow up actions

11.1 Specialist challenging behaviour team proposed within new ER stepped dementia care model fits in with NDS recommendations

11.2 Established residential care home learning network in Withernsea

11.3 Regular residential care home clinics are being provided by several Consultants across ER (for example, Dr Lawley, Dr Pierce, Dr Glover)

11.4 Established good practice in supporting people to make a successful transitions into residential care and to support care home staff in managing challenging behaviours

11.5 Local small scale research study on supporting successful adjustment into residential care for people with dementia and their family caregivers

11.6 Well established dementia care training for local authority residential and home care staff run by Esme Moniz-Cook

11.7 Challenge Demcare research programme investigating psychological treatment for ‘behaviour that challenges’ in dementia

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12.0 Improved end of life care for people with dementia.

People with dementia and their carers to be involved in planning end of life care which recognises the principles outlined in the Department of Health End of Life Care Strategy. Local work on the End of Life Care Strategy to consider dementia.

Follow up actions

12.1 OPMH practitioners with a specialist interest in EoL care in dementia and who have contributed to local educational and networking sessions are:

12.2 Good links with the Macmillan Nursing and GP services have been established in some areas, for example, Holderness.

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13.0 An informed and effective workforce for people with dementia.

All health and social care staff involved in the care of people who may have dementia to have the necessary skills to provide the best quality of care in the roles and settings where they work. To be achieved by effective basic training and continuous professional and vocational development in dementia.

Follow up actions

13.1 Development of [primary care] Dementia Academies

13.2 Well established dementia care training for local authority residential and home care staff run by Esme Moniz-Cook

13.3 Interest in developing and delivering OPMH modules locally alongside other senior health and social care professionals

13.4 Local multi-agency OPMH Training Sub-group

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14.0 A joint commissioning strategy for dementia

Local commissioning and planning mechanisms to be established to determine the services needed for people with dementia and their carers, and how best to meet these needs. These should be informed by the World Class Commissioning guidance developed to support the Strategy

Follow up actions

14.1 New stepped dementia care model proposed and presented to ER Commissioners

14.2 NDS Implementation group established

14.3 Dementia care commissioning tool has been presented locally

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15.0 Improved assessment and regulation of health and care services and of how systems are working for people with dementia and their carers

Inspection regimes for care homes and other services that better assure the quality of dementia care provided.

Follow up actions

15.1 The Care Quality Commission (CQC) is operational from April 2009 to protect and promote the health, safety and welfare of people who use health and social care services and to encourage improvement, by inspecting and assessing for quality across health and social care services, and primary and secondary care (NDS)

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16.0 A clear picture of research evidence and needs

Evidence to be available on the existing research base on dementia in the UK and the gaps that need to be filled.

Follow up actions

16.1 Local researchers contributing to national and international dementia care research

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17.0 Effective national and regional support for implementation of the Strategy

Appropriate national and regional support to be available to advise and assist local implementation of the Strategy. Good-quality information to be available on the development of dementia services, including information from evaluations and demonstrator sites.

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To learn more about any of the above, Click here for the National Dementia Strategy Consultation.

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