Issue 2

BRISTOL DEMENTIA PATHWAY PROTOCOL

Issue 2

Issue 2Summary

This Protocol is to be used alongside the Bristol Dementia Pathway. It sets out good practice

guidelines for anyone who provides support for people living with dementia. These people will

include:

General Practitioners and other health staff at Primary Care level

A wide range of community and voluntary sector organisations

Community Healthcare organisations

Private sector care and support agencies

Staff from Secondary Care services, including hospitals

Adult social care staff.

The Protocol is underpinned by Bristol’s Dementia Inclusion Vision:

This work has been commissioned by the Bristol City Council Health & Social Care

Commissioning Manager and the NHS CCG Programme Manager for Older People, as part of

the Joint Bristol Dementia Strategy; and in response to the National Dementia Strategy. The

Protocol has been developed with the assistance and feedback of the Dementia Pathway

Support Work Focus Group; which includes 4 General Practitioners from across Bristol.

This Protocol will be reviewed periodically to confirm its effectiveness and to reflect future

changes in the Dementia Pathway.

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“Recognising that dementia is an illness that occurs within a wider social context and, whilst

there are a set of symptoms and manifestations of the illness itself, it is likely to have a

different impact upon people depending upon their identity, background, level of

connectedness/social support etc. It is also recognised that for some people there will be a

need for support from particular health and/or social care services at different times; such

services must be flexible, well connected with one another and easily available when they

are most needed”.

Issue 2Glossary of Terms

The following definitions are important to the use of this Protocol.

Term DefinitionCarers’ Emergency

Card

In the case of an emergency involving a carer (e.g. the main carer

is taken ill or is involved in an accident) the Carers’ Emergency

Card sets out arrangements to ensure that the person they are

caring for is still supported.

Care Direct Part of Bristol City Council and is the main way to contact adult

care (social services).

Dementia Pathway The notional seamless ‘journey’ of a person with dementia, from

assessment and diagnosis through to the end of their life.

Person-Centred

Support

Support which focuses on the individual and their particular

circumstances rather than the illness; respecting their

individuality, their personal history, their preferences and

individual needs.

Stakeholder In the context of dementia, a person with dementia, a family

member or friend, including those who care and provide support

and assistance to the person with dementia; any person/agency

with an interest in dementia.

Wellbeing Plan A wellbeing plan sets out the general information about the

person with dementia – e.g. power of attorney, carer information;

and information about their support and social needs associated

to their diagnosis.

This is Me For someone with dementia, changes such as moving to an

unfamiliar place or meeting new people who contribute to their

support can be unsettling or distressing. This is Me provides

information about the person at the time the document is

completed. It can help anyone supporting a person with dementia

build a better understanding of who he/she really is.

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Issue 2Section 1 INTRODUCTION

1.1 Aim of the ProtocolThis Protocol is to be used alongside the Bristol Dementia Pathway. It provides good practice

guidelines for anyone who provides support for people living with dementia and is intended to:

1.2 Protocol Structure

Section 2 of the Protocol describes the structure of the Post-Diagnostic part of the Dementia

Pathway in Bristol.

Section 3 contains a table of good practice guidelines which describe the support that should

be offered to people with dementia as they proceed through the Pathway. It is the responsibility

of agencies working with people with dementia to ensure:

that the guidelines are met;

the most appropriate (and least interventional) options are considered at every stage of the

Pathway;

support is offered at appropriate times: many of the guidelines apply to more than one stage

of the Pathway and may be offered a number of times (see column 1 of the table for an

indication of which stages the guidelines apply to);

where it would be helpful to the person with dementia, they are put in touch with other

organisations – either to work collaboratively or independently of the lead agency (see

column 3 of the table for lists of key organisations that can provide further information);

there are smooth transitions between services and stages of the pathway.

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Ensure people with dementia stay in control of their care and are always encouraged to continue to live full, involved and creative lives;

Support connection and collaboration between organisations;

Ensure smooth transitions between services for people with dementia;

Ensure that the most appropriate (and least interventional) options are considered at every stage of the Pathway.

Issue 2Section 2 BRISTOL DEMENTIA PATHWAY PROTOCOL

2.1 Bristol Dementia PathwayThe Dementia Pathway maps the notional journey of a person with dementia from initial

concerns about their memory, through to the end of their life. The Pathway can be separated

into two main sections:

- Pathway to diagnosis – which can be accessed through the General Practitioners.

- Post-diagnostic pathway – as illustrated on page 5, and the focus of this Protocol.

2.2 Post-Diagnostic Pathway The Post-Diagnostic Pathway sets out the potential critical points associated with the

progression of dementia; the guidelines in this Protocol establish good practice in offering

appropriate support to individuals at each of these points. It is recognised though that dementia

is likely to have a different impact on people depending upon their identity, background, level of

connectedness/ social support etc. This means that support must be flexible and thoughtful –

offered in response to individuals’ expressed needs rather than necessarily the stage of the

Pathway that they have reached.

Support should begin informally and focus on maintaining relationships with family and friends;

and encourage the pursuit of existing and new interests and activities. However as a person’s

needs change with progressing dementia, and there is an increased need for formal support,

such services must be well connected with one another and easily available when they are

most needed.

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Anyone who experiences problems with their memory can access the Bristol Dementia

Pathway (that is to say, they do not need to have a formal diagnosis). An individual can

enter, leave and re-enter the pathway at any stage, with no limit on how long they spend at

any of the stages. The Protocol promotes the idea that support is tailored to individuals’

needs and preferences, as and when it is required.

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Issue 2 BRISTOL DEMENTIA PATHWAY

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Issue 2

Section 3 GUIDELINES SUPPORTING GOOD PRACTICE ON THE DEMENTIA PATHWAY

Note: Contacts are included in the table below for professional referral only. All other contacts are included in the separate Dementia Information Prescription.

GuidelineTitle

Guideline Further Information(some key organisations)

Early Intervention

Applicable to ‘Memory Concerns’ and ‘Assessment & diagnosis’

1.1 Talk to the person with dementia to explore what their diagnosis means to them and their support network. Topics might include:

- Recommending ways of talking to their family and friends (including those who provide support and assistance) about their diagnosis.

- Encouraging them to maintain their social networks & their everyday life in the community.

- Promoting taking part in activities that are meaningful to them.

- Advising what medication is available, where possible.

- Encouraging peer support for people with learning difficulties and dementia.

If English is not the first language of the person with dementia, an interpreter will be made available to assist in these discussions. Information and documents will also be available in other languages.

General Practitioner & Primary care staff –Bristol GP Surgeries' contact information

Bristol Dementia Wellbeing Service

Bristol Community Health Dementia Support –0117 900 2485

Community Learning Difficulties Team – 0117 908 5000 (North), 0117 958 5666 (Central),0117 987 8383 (South).

NBT Neurology –0117 414 4405

1.2 Provide the person with dementia with a Living Well with Dementia in Bristol information pack. This will include a list of support and services they may find useful in the future; a Dementia Guide and other information leaflets.

1.3 If it is necessary, a review of the initial diagnosis could be made. This may include carrying out further diagnostic testing by Secondary Care teams.

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Issue 2

GuidelineTitle

Guideline Further Information(some key organisations)

Living Well with Dementia

Applicable to all of the Pathway

2.1 People with dementia are able to lead full, involved and creative lives. This includes being recognised and valued for who they are – their roles, responsibilities and identities – within the community and their social networks.

Families and friends Faith communities Well Aware Libraries Leisure centres VOSCUR on-line directory Link Age Healthwatch Bristol Retired & Senior Volunteer

Programme (RSVP) Royal Voluntary Service Community organisations &

groups Alzheimer’s Society British Red Cross Age UK Bristol

2.2 Continue conversations with the person with dementia. These might include:

- Encouraging them to maintain personal and social relationships, engaging with family, friends and the community.

- Promoting a balance between sustaining activities and introducing new ideas/activities to everyday life.

- Assessing their ability and confidence to remain independent within their community.

- Providing signposting to appropriate support and services which can be accessed when necessary.

2.3 Include notes of these conversations in the health record, along with the following:

- Wellbeing plan for the person with dementia.

- If appropriate, tests to establish whether a person has capacity to consent to the wellbeing plan.

- Planned reviews of the diagnosis and/or further diagnostic testing if deemed necessary and appropriate (see guideline 1.3).

- Planned yearly reviews of the wellbeing plan; with provision for more regular reviews if necessary.

- For people with learning difficulties and dementia, annual health checks and more frequent assessments.

General Practitioner –Bristol GP Surgeries' contact information

Bristol Dementia Wellbeing Service

Community Learning Difficulties Team – 0117 908 5000 (North), 0117 958 5666 (Central),0117 987 8383 (South).

NBT Neurology –0117 414 4405

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Issue 2Guideline

TitleGuideline Further Information

(some key organisations)

Living Well with Dementia cont’d.

Applicable to all of the Pathway

2.4 Work with the person with dementia to create a wellbeing plan, which will include:

- A This is Me leaflet – filled in by the person with dementia – to briefly describe their history, family connections, interests, likes and dislikes with regard to their care.

- Advice and information on how to continue living independently in the community and carrying out everyday tasks.

- Identified family support.

- An assessment of any support needed to carry out daily activities.

- Advice and information on how to reduce the risk of crises.

- Advance decisions about end of life care if these are in place (see guideline 3).

- An identified and named worker to prepare, implement and review the wellbeing plan.

An interpreter will be made available for those who do not use English as their first language.

General Practitioner –Bristol GP Surgeries' contact information

Bristol Dementia Wellbeing Service

NBT Neurology –0117 414 4405

Care Direct – including social worker

‘This is Me’ (Alzheimer’s Society) – available from: http://alzheimers.org.uk/thisisme

2.5 Talk to family members or friends, who provide support and assistance to the person with dementia, about their own lives. Topics might include:

- Encouraging family members or friends to continue aspects of their own everyday lives that are important to them and that they enjoy.

- Recommending that they maintain social relationships and support networks.

- The offer of an assessment as set out in the Carers (Equal Opportunities) Act 2004.

- Identifying support and information for the family members or friends, appropriate to the results of their assessment – e.g. carers’ breaks, support in employment, benefits information.

- Introducing the Carers’ Emergency Card to ensure an appropriate response is in place in the event of a crisis involving the main carer.

If English is not the first language, an interpreter will be made available to assist in these discussions. Information and documents will also be available in other languages.

Families and friends Faith communities Well Aware Libraries Leisure centres Link Age Healthwatch Bristol Retired & Senior Volunteer

Programme (RSVP) Alzheimer’s Society Care Direct – including

Carers’ Emergency Card Citizens Advice Bureau Carers’ Support Centre

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Issue 2Guideline

TitleGuideline Further Information

(some key organisations)

Planning for the Future

Applicable to all of the Pathway

3.1 It must be assumed that people with dementia have the Mental Capacity to take part in discussions and make decisions about their future. They may need information about:

- Speaking to their employer about their diagnosis and how it may affect their employment in the future.

- Options about driving.

- Lasting Powers of Attorney.

- Making a will.

- Considering making advance decisions about medical treatment – these are legally binding and should be followed by all medical professionals.

All information and paperwork will be available in other languages for those who cannot speak English as their first language.

Citizens Advice Bureau Avon & Bristol Law Centre Age UK Bristol Information

& Advice Manager Dementia Navigator Dementia Practitioner

3.2 If necessary, support the person with dementia to contribute to discussions and decisions about their future. An interpreter will be made available if the person with dementia cannot speak English as their first language.

All organisations

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GuidelineTitle

Guideline Further Information(some key organisations)

Crisis Intervention& Support

Applicable to all of the Pathway

4.1 If not already in place, the main carer should have a Carers’ Emergency Card to ensure that support for the person with dementia is available in the event of an emergency involving the main carer (see guideline 5).

Bristol Dementia Wellbeing Service

Bristol Crisis Service0300 555 0334

Carers’ Emergency Card Care Direct – including

access to re-ablement teams

Complex Intervention Team – 0117 919 5800

West of England Care & Repair

Bristol Community Health Rapid Response –0117 903 0202

Carers’ Support Centre Intermediate Care Team

0117 342 6667

Supporting Dementia Team0117 903 37509

4.2 Discuss with the person with dementia how assistive technologies (AT) could help them live independently at home. AT can:

- Prompt people to take medications and undertake daily living tasks

- Orientate in terms of day, time and season

- Reduce the risk of falls or getting lost after leaving the home/ its vicinity

- Reassure family members and friends, who provide support and assistance, that the person with dementia is safe.

If the person with dementia needs help to choose and install AT devices, signpost them to appropriate organisations.

4.3 If a crisis occurs that means the person with dementia is unable to live at home without support (including in the short term), work with the person with dementia, their family and wider social network and all involved professionals to set up short-term interventions and long-term support. There is a risk that if support is inadequate, the person might need an emergency admission to hospital.

4.4 After a crisis has been resolved, review with the person the support they receive and if necessary provide information and signpost to other organisations, highlighting ways of reducing the risk of future crises and unnecessary hospital admissions.

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GuidelineTitle

Guideline Further Information(some key organisations)

Crisis at Home

Applicable to ‘Crisis’

5.1 If the main carer is admitted to hospital as an emergency, or can no longer support the person with dementia, activate the emergency response procedure, using the telephone number and identification information on the Carers’ Emergency Card.

Bristol Crisis Service0300 555 0334

Care Direct Intermediate Care Team

0117 342 6667

Supporting Dementia Team0117 903 37509

Carers’ Support Centre Citizens Advice Bureau Age UK Bristol Information

& Advice Manager West of England Care &

Repair Landlord Bristol City Council Home

Choice West –0117 922 2400

British Red Cross

5.2 If a financial breakdown occurs, ensure that the person with dementia, or someone able to act on their behalf, receives appropriate advice from a finance/benefits adviser about available benefits/ debt management services and signpost to financial support.

5.3 In the event of a housing crisis, ensure that the person with dementia, or a family member or friend who can provide assistance, receives advice and support from an appropriate agency.

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GuidelineTitle

Guideline Further Information(some key organisations)

Crisis Resulting in a Hospital Admission

Applicable to ‘Hospital’

6.1 When a person with dementia is admitted to hospital, a copy of his/her completed This is Me leaflet and their wellbeing plan should be made available for use by all staff supporting him/her.

Family or care provider to provide completed ‘This is Me’

6.2 Hospital wards and staff should implement specific measures to ensure that they are dementia friendly, in accordance with the South West Hospital Standards. This includes:

- Ensuring all wards are suitable environments for people with dementia – e.g. appropriate signage, contrasting colour schemes & handrails.

- As for all patients, people with dementia should feel that their care is delivered at all times with compassion and empathy, in a respectful and non-judgemental way. (Essence of Care 2010)

North Bristol NHS Trust University Hospitals Bristol

NHS Foundation Trust Bristol Dementia

Partnership Bristol Community Health South West Hospital

Standards available here

6.3 Hospital staff: use the ‘This is Me’ leaflet and support the person with dementia throughout their admission, stay and discharge from the hospital:

- Use the Discharge of Patients from Hospital Policy and implement guidelines associated to this. This includes the Discharge Checklist and Discharge Pathway to confirm that arrangements are in place for the discharge of the person with dementia.

- Engage the person with dementia, family members or friends who will provide support and assistance, in the discharge process, enabling their needs and requirements to be met.

- For people with learning difficulties and dementia, a Learning Difficulties Liaison Nurse is available within the hospital to support them.

Hospital staff West of England Care &

Repair British Red Cross Home

from Hospital Care Direct Re-ablement

Team –0117 922 2700

NBT Learning Difficulties Liaison Nurse –0117 414 1239

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GuidelineTitle

Guideline Further Information(some key organisations)

Care Home Support

Applicable to ‘Care Home’

7.1 Care home staff provides meaningful activities within/outside the home to meet the social needs of the person with dementia. Activities should:

- Provide intellectual stimulation, focus on life stories, enable people to re-establish lost skills and to develop new skills.

- Enable residents to achieve a sense of belonging in their local community (Joint specification for residential and nursing care services December 2012).

Visits from and to community groups – choirs, artists etc.

Care Home – find care home contact information here

Alive! Activities – 0117 377 4756

Care Home Service Specification available here

7.2 Care home holds regular reviews with the person with dementia, the family members and friends. Conversations should include:

- Encouraging family and friends to visit regularly, participate in meal times and activities.

- Discussing any physical changes in the person with dementia; for example difficulty swallowing, or incontinence, that the person, staff, family or friends have noticed.

- Discussing any behavioural changes in the person with dementia; for example hallucinations or more frequent falls.

- Considering any concerns or questions that the person, staff, family or friends have.

Care Home Families and friends GP / Community Nurse for

Older People attached to the care home

Bristol Community Health Occupational Therapist – 0117 919 0290

Care Home Liaison Team – 0117 919 5800

7.3 In response to these reviews, care home staff will put in place appropriate actions. This can include:

- Providing training for staff about supporting people with dementia, reducing the risk of falls; and pain awareness.

- Introducing assistive technologies to support people with dementia to remain as independent as possible.

- Any night-time monitoring of people with dementia should be done in an unobtrusive way and can be aided by assistive technology.

- Installing aids and adaptations to assist in movement between beds, chairs and wash facilities.

- Environmental assessment of the care home; for example does the environment promote positive wellbeing and enable easy orientation and mobility?

Care Home Bristol Community Health

Occupational Therapist – 0117 919 0290

Care Home Liaison Team – 0117 919 5800

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GuidelineTitle

Guideline Further Information(some key organisations)

End of Life

Applicable to ‘Life after diagnosis’, ‘Hospital’ and ‘Care Home’

8.1 Support the person with dementia – along with family members and friends – in line with their expressed wishes about the end of their life:

- Listen to, and act upon, any wishes made by the person with dementia or their family and friends – including advance decisions and religious or cultural requests (see guideline 3).

- Ensure the person with dementia is comfortable, their symptoms are managed and they are free from pain, treated with respect and dignity.

- Enable the person with dementia to contribute to discussions about the end of their life, and any necessary care, as far as they are able.

- Involve family members, and friends, in discussions and planning about the end of life care for the person with dementia. If the person with dementia lacks mental capacity, this should be done on behalf of them and in their best interest.

- Ensure family members and friends are supported while the person they care for is dying and during their bereavement.

- Link family members with friends, wider social networks or organisations that might assist with funeral arrangements, if necessary.

Families and friends Faith communities Other communities that are

important to the person with dementia

General Practitioner / Community Nurse for Older People

Bristol Dementia Wellbeing Service

St Peter’s Hospice –0117 915 9400

Dementia Voice Nurse – 07808 249439

Bristol Community Health Palliative Care Home Support – 0117 982 8545

Lift IAPT Psychology –0117 982 3209

Cruse Bereavement Counselling –0117 926 4045

8.2 If a person with dementia wishes to die at home, their palliative care needs should be assessed by a Primary Care team. Ensure the team have up to date health information about the person with dementia, and access to their wellbeing plan, This is Me and advance statements about end of life care.

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GuidelineTitle

Guideline Further Information

General Guidelines

Applicable to all stages of the Pathway

9.1 Jointly agreed policies and procedures include the Bristol Dementia Pathway Protocol and supporting user guide, outlining the processes of collaborative working, sharing of information between services and individual reviews.

All organisations

9.2 Policies and procedures should include review dates and a named person to carry out these reviews.

All organisations

9.3 An information sharing protocol should be in place across organisations and agreed to by all stakeholders to enable the ease of communication and collaborative working.

All organisations

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INDEX

Advance Decisions 8, 9, 14

Assistive Technology 10, 13

Bristol Dementia Inclusion Vision 1

Care Direct 2, 8, 10, 11, 12

Care Home 13, 14

Carers 8, 10, 11

Carers’ Emergency Card 2, 8, 10, 11

Crisis 8, 10, 11, 12

End of Life 8, 14

General Practitioner 1, 4, 6, 7, 8, 14

Hospital 1, 10, 11, 12, 14

Learning Difficulties 6, 7, 12

Mental Capacity 9, 14

Powers of Attorney 9

Stakeholder 2, 15

This is Me 2, 8, 12, 14

Wellbeing Plan 2, 7, 8, 14

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This Protocol defines good practice for the various stages of the Bristol Dementia

Pathway as it currently stands; it will be reviewed in line with any changes.

For further information about what support is available on the Dementia Pathway, the

‘Living well with dementia in Bristol’ information pack can be obtained from GP practices,

the Bristol CCG and Alzheimer’s Society in Bristol. The information packs contain:

A Dementia Guide – Alzheimer’s Society guide to living well after diagnosis.

‘Bristol living well with dementia’ information prescription – a localised

information list produced by Dementia Web and supported by Guideposts

Trust.

Leaflets promoting involvement in research.

Other relevant leaflets about services and sources of information in Bristol.

Date: September 2014

Date of Review: December 2014

Author: Project Development Officer for Alzheimer's Society.

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