Dementia Carer voices Outreach- Report: January 2013 – January 2014

Dementia CarerVoices

Interim Report: January 2013 – January 2014

Dementia Carer Voices, managed by the ALLIANCE, is an initial two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognises the importance of the carer voice, in informing future service provision and in empowering carers themselves.

The project aims to –

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Harness the work undertaken to date by the Tommy on Tour campaign, and support Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland.

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Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feel enabled to ask for additional help when it is needed;

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Capture the experiences of carers across Scotland with a view to informing future policy and service provision;

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Raise awareness of the issues around caring for someone with dementia including among health and social care students;

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Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia;

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Highlight the role of Carers as natural resources; Carers as people with needs; Carers as people with independent lives;

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Work with other Carer Organisations and key stakeholders within and beyond the ALLIANCE’s network to ensure that relevant strategies are well informed by the views of service users.

This report will explore the impact that Dementia Carer Voices has had in its firstnine months, through visits and talks to Carer Organisations; the provision of written materials with key carer messages; dissemination of information through social media, network events and awareness raising films.

Anticipated Outcomes and Related Project Activity

Greater understanding by health and social care professionals of dementia and the carer journey Since January, Project Officer Tommy Whitelaw has delivered presentations to NHS Health Professionals and Social Care Professionals in a variety of settings including NHS staff events, universities and colleges. These talks use the personal stories and experiences of people with dementia and their carers to inspire and motivate staff, highlighting areas of possible service improvement.

Hospitals 17.01 Victoria Infirmary 05.03 Southern General Hospital 09.04 Southern General Hospital 16.04 Southern General Hospital 23.04 Southern General Hospital 30.04 Southern General Hospital 11.06 Glasgow Victoria Infirmary 02.07 Vale of Leven Hospital 03.07 Royal Free Hospital London 09.07 Vale of Leven Hospital 01.08 Glasgow Royal Infirmary 27.08 Glasgow Royal Infirmary 03.08 Glasgow Royal Infirmary 17.09 Glasgow Royal Infirmary 25/09 Royal Alexandra Hospital 07.10 Glasgow Victoria Infirmary 08.10 Mount Hospital Leeds 15.10 Royal Alexandra Hospital 31.10 Glasgow Western Infirmary 05.11 Glasgow Royal Infirmary 06.11 Glasgow Victoria Infirmary 08.11 Monklands Hospital 12.11 Raigmore Hospital 19.11 Glasgow Royal Infirmary 26.11 Glasgow Royal Infirmary 04.12 NHS Tayside and Grampian OPAC Collaborative Learning Session 05.12 NHS Tayside and Grampian OPAC Collaborative Learning Session 16.12 Stobhill Hospital 20.12 Royal Alexandra Hospital Conferences / Other 22.03 SDCRN Annual Conference 19.04 Alzheimer Show London 19.04 Camden Council DA Event 21.04 Improving links in Primary Care Meeting 01.05 ALLIANCE Annual Conference 30.05 Person Centred H&C Conference 20.06 RCN Scotland Board 21.06 NHS GGC Releasing Time to Care Event 04.07 Health Education East of England Staff Development Day 08.08 NES/ SSSC Dementia Programme Board 10.09 Care Inspectorate Staff Development Day 11.09 Care Inspectorate Staff Development Day 02.10 Alzheimer’s Society Wales Conference 03.10 Mackay Hannah Ageing Summit 23.10 SPAEN AGM 01.11​NHS GGC Surgery & Anaesthetics Sharing Good Practice Conference 14.11 ​NHS Highland Dementia Champions 14.11 NHS Highland OPAC/Dementia Standards Steering Group 22.11 Person Centred Health & Care Collaborative Learning Session 03.12 GCVS Social Media for Social Good Conference Universities 16.02 Glasgow Caledonian University 19.02 Glasgow Caledonian University 12.03 Glasgow Caledonian University 04.06 Dundee University 05.08 Dundee University 08.08 Dundee University 17.09 Glasgow University 13.11 Centre for Health Science/ University of Stirling Highland Campus – Inverness 18.11 University of Glasgow 17.12 Glasgow Caledonian University Colleges 05.03 Cardonald College 11.03 Cardonald College 15.03 Ayr College 28.03 Reid Kerr College 07.05 Reid Kerr College Tommy shared his story for use in NHS Greater Glasgow and Clyde’s Patients’ Stories Library for hospital staff. 1000 copies of the film were distributed to ward sisters for use as a staff training resource and were shown across NHSGGC hospital sites during Carer’s week 2013 to raise awareness about the importance of supporting carers in contributing towards delivering person centred care. Similarly, Tommy’s address to the Care Inspectorate’s staff development conferenceon 11th September was filmed and made available online for staff training purposes. Dementia Carer Voices is participating in the rolling out of the ‘Getting to Know Me’document across NHS Greater Glasgow and Clyde, which records personal information about vulnerable elderly patient’s likes and dislikes, names of family and friends, and what may be worrying them during admission to an acute setting.Tommy is introducing the document by sharing his experiences of caring for his late Mother Joan with Lead Nurses and staff, and therefore highlighting the importance of ‘remembering the person’ and looking beyond an individual’s diagnosis. Awards 2013 Age Scotland Jess Barrow Award for Campaigning and Influencing 2013 NHS Greater Glasgow and Clyde Chairman’s Award – Volunteer/ Patient Ambassador Finalist in 2013 Herald Scottish Politician of the Year Awards – Public Campaign

The above activity contributes to one of the two key improvement areas identified inScotland’s first National Dementia Strategy (2010) – improving dementia services in acute general hospital care.

“General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes.”

The activity also complements the 10 – Point National Dementia Care Action Plan for Acute Care within Scotland’s second National Dementia Strategy (2013) and recent workforce initiatives such as the Alzheimer Scotland Dementia Nurse Consultants and the Dementia Champions.

Reduce isolation of carers of people with dementia Dementia Carer Voices has undertaken a range of activity to promote carer self- identification, highlighting the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feeling enabled to ask for additional help when it is needed. Delivering presentations at carer events across Scotland, sharing Project Officer Tommy Whitelaw’s own experiences of caring and recurring themes from ‘life story letters.’

19.02 South Ayrshire Carers Dementia Awareness Day 26.02 ‘Making Life Easier’ Event Murrayfield 14.03 Lockerbie Carers Dementia Group 22.03 SDCRN Annual Conference 19.04 Alzheimer Show London 19.04 Camden Council Dementia Awareness Event 01.05 ALLIANCE Annual Conference 02.05 North Ayrshire Council Carer’s Strategy Event 09.06 BBC Radio Scotland Sunday Show Interview for Carer’s week 18.06 Presentation to Sainsbury’s staff Prestwick 20.06 ALLIANCE Involvement Networking Event 11.07 Glasgow North East Carers 31.07 Glasgow North West Carers 17.10 Carers Link East Dunbartonshire 13.11 Alzheimer Scotland Resource Centre Inverness 29.11 ALLIANCE Carers Rights Day Event 11.12 South Ayrshire Carer Centre The BBC Radio Scotland Medical Matters: Caring for Carers programme featuring Tommy Whitelaw was re-aired twice in February due to high levels of demand. Dementia Carer Voices was a founding partner in the production of the “It’s Okay to ask for help” carer engagement film along with NHS Greater Glasgow and Clyde, Glasgow City Council Social Work Services and Alzheimer Scotland, supported financially by Glasgow CHP. The video highlights the impact of supporting a family member with dementia and the benefits of accessing carer support services in the City. The film was officially launched during Carers’ week 2013 and a total of 2000 copies are to be distributed; in carers booklets via Glasgow CHP (900) to other clinics and services including carers’ centres (500), Alzheimer Scotland (300) and the ALLIANCE (300).

The above activity will help people with dementia and their carers in adjusting to the diagnosis, navigating through the range of services available and planning for future care, and therefore complements;

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The Scottish Government’s national commitment on post diagnostic support introduced in April 2013.

And contributes to;

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Action Point 4.3 of the Carers and Young Carers Strategy for Scotland 2010-2015.  

“Over the next five years, local authorities and Health Boards, with partners, should seek to provide preventative support to carers and minimise the need for crisis intervention.”

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First Challenge identified in Scotland’s National Dementia Strategy (2013-16).

“We must offer care and support to people with dementia and their families and carers in a way which promotes wellbeing and quality of life, protects their rights and respects their humanity. This is a moral imperative and it is unacceptable that too often the experience of people does not meet this standard.”

Increase awareness of carer rights The Dementia Carer Voices project flyer (2500 of which have been distributed athealth and social care professional, and carer events) incorporates the PANEL approach to Carers Rights, and informs carers of the rights they possess under the Charter of Rights for People with Dementia and their carers. Dementia Carer voices ran an hour long workshop at the ALLIANCE annual conference on ‘Supporting Rights and the Carer Voice’, which explored the contribution of a human rights based approach to dementia care, and the additional work required to embed this vision more firmly into culture and everyday practice. Workshop participants (including Health and Social Care professionals, voluntary sector staff, and carers themselves) identified a number of cultural and systemic barriers to the protection of the human rights of people with dementia and their carers in health and social care settings • Stigma and discrimination against people with dementia • Staff turnover and time constraints imposed on care staff • Low awareness among staff of duties to promote, protect and fulfil human rights • Perception among staff that it is too costly to promote human rights • Low human rights awareness among people with dementia and their carers themselves • The fear of speaking out among people with dementia and their carers This work reflects two of the Key Outcomes of the Scottish National Dementia Strategy (2013-16): • “better respect and promotion of rights in all settings…” • “people with dementia in hospitals or other institutional settings always being treated with dignity and respect”

User friendly information to support awareness raising Dementia Carer Voices has disseminated project and campaign information through its newsletters and active social media presence through Twitter and the ‘Tommy on Tour’ blog. • ‘Tommy on Tour’ Blog has received 145,000 views since 1st January 2013. Project materials such as a pop-up poster, 2500 campaign flyers, and key messages booklet have been produced and distributed at carer, and health and social care professional events.

Inform policy and practice on carer matters. • Dementia Carer Voices was the subject of a Members’ Business Debate on 20/03/13. MSPs debated Jackie Baillie MSP’s motion which highlighted the role played by carers of people with dementia, the challenges they face and the importance of supporting them wherever possible. • Cross Party support from across the Chamber was voiced in support of the project. • The Dementia Carer Voices project team produced a ten page briefing paper highlighting the ‘human impact’ of caring for a loved one with dementia, which was heavily referenced throughout the debate.   Project Officer Tommy Whitelawdelivered presentations at the following events. 02.02 Scottish Liberal Democrat Health Conference 20.04 Scottish Labour Party Conference 02.05 North Ayrshire Council Carers’ Strategy Event

Gather information supporting family and person centred approaches to health and social care. Dementia Carer Voices continues to collect ‘life story’ letters, which detail the views and experiences of those caring for someone living with dementia, and are analysed to generate key themes around which future education and awareness raising activity will take place. A Dementia Carer Voices survey is currently in operation to analyse service user experiences across a range of care settings. Key areas examined by the survey include: • Carer’s experiences of accessing support and services • Carers needs and the impact of the caring role on their quality of life • Advice for fellow carers/ health and social care professionals • Profile of respondents/ individuals they care for Key themes identified by respondents thus far related to the benefits of speaking to others (whether professionals or fellow carers) who understood dementia and appreciated what their caring journey entailed. Carers also highlighted the importance of being engaged as equal partners with health and social care professionals, and of care which recognised the individuality of the person they care for.

Key Messages

“No one ever asked” One of the most frequent concerns expressed by carers is that staff delivering care can sometimes “forget” the person inside the dementia. In order to deliver real person-centred care, it is imperative that staff know as much as possible about the lives, personalities, likes and dislikes of the people for whom they care. This enables staff to give care and treatment which meets their needs, and can therefore maximise quality of life. Recording life history information and understanding how a person lived before they developed dementia helps staff to appreciate how the person’s past affects their present life and behaviour, individualise the care of the person and help maintain their identity. “I look at them [people with dementia] and think I wonder what she did in the past. If we knew it might make some of us feel a little bit ashamed.” Nurse “Many people simply saw my Mum as a wee woman with dementia and used that as their starting point, denying her the life she had led and could have continued to lead for as long as possible.” Tommy Whitelaw

No consistency of care staff, need for sense of routine It is widely accepted that familiarity and routine can assist in managing the symptoms of dementia, but a lack of continuity in staffing is still cited as a huge frustration by many carers who have witnessed inconsistent approaches in theirloved one’s care and a lack of understanding of their needs. Too often carers experience inconsistency in staffing which does not allow for a person centred-approach to care. While extreme examples have made the headlines, frequently carers speak of having to repeat information to new staff on a regular basis. “While I recognise the need for holiday cover, how many carers through the door is too many?” Carer “There is a shortage of staff – people are brought in who don’t know the conditions of the service users they are caring for.” Care home staff member

Having a friend or ‘buddy’ who is going through (or has gone through) the same experience “A helping hand along the way” Caring for someone with dementia can be stressful because of the complex, unpredictable and progressive nature of the illness. This can have a profound social, emotional and physical impact on carers including an increased risk of stress related conditions, such as depression. Everyone affected by dementia has a unique story to tell and carers, by sharing their experiences can help to tackle themisunderstandings surrounding dementia and offer hope and advice to people in the same situation. Many carers have indicated an interest in obtaining training and support to better understand the condition and ways to cope with the difficult and challenging behaviour of their loved one. “It’s an emotional roller coaster which unless you have experienced, it defies description.” Carer.

Difficulty in becoming aware of/ accessing services Many carers talk about what they think would have been helpful or useful to know (or have access to) but that they only found out about much further into the condition and highlighted the immediate period post – diagnosis as being a crucial time for them. Some key comments raised included the need to have a very basic factsheet which signposts local and relevant support, and a step by step approach to resources for use post-diagnosis. Letters also highlighted the importance of the timing of support and intervention, as people are unique with different needs, and understanding of the condition and how it may affect them and their family. Finding out about/accessing services was described as: “like trying to crack a secret code,” “like trying to break MI5,” “I now know that help is there but you have to know where to look, no one comes to you with information or instructions.” Carer The ALLIANCE recognises that the Scottish Government’s guarantee of at least a year’s worth of post-diagnostic support, coordinated by a trained link worker, has the potential to assist people greatly in this regard to prevent carers from reaching crisis situations. Implementation across all care settings, including care home and continuing care however, is vital.

Greater recognition of the carer role amongst health and social care professionals While we recognise the progress being by the Scottish Government through the “Promoting Excellence” framework, many carers still feel that their views and needs are overlooked by health and social care professionals and that their right to supportthe person they care for as full partners in the provision of care is not well recognised. Some carers highlighted positive examples of being involved during a hospital stay e.g. helping with meals or personal care, but it would appear that the approach to this varies from ward to ward, and hospital to hospital. Carers can provide vital information and support during hospital admission or investigation which can be very disorienting for someone with dementia. Involving Carers who wish it, in the day to day care and treatment of their loved one benefits both the person with dementia and the staff involved. The ALLIANCE believes that such partnership should routinely be the norm.  In this regard, the ALLIANCE welcomes the Scottish Government’s pilot of more flexible visiting hours in Scottish hospitals, which will allow those living with dementia to benefit from a familiar face to assist and to allay fears of being in an unfamiliar environment, and looks forward to it being rolled out at the earliest opportunity. “As a carer it was recognised by professionals that my Mum would eat better and cooperate more with interventions if I was there to explain and assist. The fact is she trusted me.” Carer. “Especially in (the) care of person with challenging behaviour who had terrible night terrors, it was helpful to have his daughter come in and settle him. Avoided need for any sedation.” Mental Welfare Commission.

Greater understanding from employers Carers face numerous challenges in continuing to work after a loved one is diagnosed with dementia and a large proportion of  letters were from carers who had chosen, or been forced to alter their employment circumstances in order to carry out their caring role. Employment is not just a source of finance and occupation; it often provides necessary social contact and intellectual stimulation and continuing work in some form may be beneficial to carers themselves. Raising awareness of dementia and its symptoms among employers would ensure that they are better placed to explore what steps can be taken to help the individual meet both caring and work commitments.

Grief that never goes away Carers’ letters indicate that the hardest part of their journey is not the practical challenge which they face on a daily basis, but rather the emotional impact of physically seeing their loved one in front of them but only getting occasional and increasingly rare glimpses of the mum and dad, husband or wife that they used to be. It is for this reason, that grief has been described as the “constant yet hidden companion” of dementia both for people with dementia and their families. “The most difficult part is seeing them slip away, bit by bit.” Carer “The saddest, longest, goodbye.” Carer This is but one of the unique challenges posed by dementia which often even friends and family don’t understand and thereby adds to the sense of isolation and hopelessness that many carers already feel.

Across each of these areas the ALLIANCE recognises that there are pockets of good practice supported by a range of Carer Organisations. Despite this, individual carers can often feel lost and isolated and spreading good practice across particularly vulnerable and “hard to reach” groups is especially important.

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