Connecting people, connecting support

Making dementia everyone’s business : a radiographers perspective

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I’ve had a keen interest in improving the care of people living with dementia who visit our imaging departments since my grandfather was diagnosed over 20 years ago.

At this time, little was known of the disease in comparison with today and as a consequence patient centred care was not the norm.

Today one million people in the UK will have a diagnosis of dementia by 2025 and this will increase to two million by 2050.

Over the last three years I have been a part of an Allied Health Professions (AHP) dementia expert group. This group was charged with producing a policy document outlining the contribution and impact that AHP’s can have to the quality of life and care given to people living with dementia and their carers in Scotland.

The document titled Connecting People, Connecting Support, has now been published and can be found here, along with an overview of the journey to create the document.

I wanted to write about the experience of being involved with this group as it has highlighted what can be gained from collaborative working.

This document was commissioned by the Scottish Government in partnership with Alzheimer’s Scotland. This meant liaising directly with people living with dementia, hearing directly from them about what would enhance their treatment and ultimately their life.

The group also learned about the various roles of AHPs both within the acute and primary care setting and the part that we all play in the patient journey.

This was a great opportunity to raise the profile of our profession to a wider audience through social media, blogs and literature, all of which can be found on the Alzheimer’s Scotland website.

As a result of this collaborative working we were able to ensure that the document could be aimed at a wide audience, from other healthcare workers to people living with dementia and their carers.

‘Connecting People, Connecting Support’ is mainly demonstrating the work of the four AHP groups, physiotherapy, occupational therapy, dieticians and podiatry, that can have the biggest impact on patient’s living with dementia.

Regardless of the stage that an individual is at on their dementia journey, input from these professions can drastically improve their outcome and ensure that care is patient centred.

The document has several key ambitions. The most pertinent for radiographers working in both therapeutic and diagnostic departments is around the standard of education that should be in place for the multidisciplinary teams working with our departments.

The aim is that all members of the healthcare team will be educated to a skilled level in dementia care.

The terminology used to describe this varies in each of the four countries, however, all have the same aim of ensuring that the framework structures for dementia education are in place.

By guaranteeing fundamental skills and advancing the leadership in this area, we can ensure that care is patient centred. Higher education institutions are integral to this training goal.

Since 2014 all Scottish universities ensure student radiographers are taught dementia care modules to the required level, equipping them with the skills to work with patients living with dementia who visit our departments.

The Society and College of Radiographers have also been instrumental in producing guidelines for radiographers caring for those living with dementia who visit our departments.

These can be found on the Society and College of Radiographers website along with links to other key publications here.

The message I would like anyone reading this article to take away is that by making ‘dementia everyone’s business’, radiographers have scope to improve the care given within our departments.

Each one of us can ensure that we complete the education required and with the help of dementia champions we can continue to look at ways in which we can ensure that the care we offered is tailored to meet our patients varied needs.

Author: Caroline Handley, Diagnostic Radiographer, NHS Greater Glasgow & Clyde

This article was reproduced by permission of Caroline and the Society and College of Radiographers.  A copy of this article published on the 14th November can be found here:

This article was reproduced by permission of Caroline and the Society and College of Radiographers.  A copy of this article published on the 14th November can be found here:

https://www.sor.org/news/making-dementia-everyone-s-business

caroline_handley
Author: Caroline Handley, Diagnostic Radiographer, NHS Greater Glasgow & Clyde

This article was reproduced by permission of Caroline and the Society and College of Radiographers. A copy of this article published on the 14th November can be found here:
https://www.sor.org/news/making-dementia-everyone-s-business

Previous blogs by Caroline

11th August 2016 Allied Health Professionals Maximising Physical Wellbeing  WHAT IS A RADIOGRAPHER? https://letstalkaboutdementia.wordpress.com/2016/08/11/allied-health-professionals-maximising-physical-wellbeing-3

1st June 2017 Maximising Physical Wellbeing: Radiographers making dementia our business! https://letstalkaboutdementia.wordpress.com/2017/06/01/maximising-physical-wellbeing-radiographers-making-dementia-our-business/#comments

 

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Connecting people, connecting support

SPOTLIGHT: Allied health professionals enhancing daily living

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Background

Connecting People, Connecting Support is about how allied health professionals (AHPs) in Scotland can support people with dementia, their families and carers to live positive, fulfilling and independent lives for as long as possible. The document presents an evidence-informed case to support an approach to practice for ALL AHPs in Scotland when working with people living with dementia – what we call the AHP approach. The fundamental understanding driving the AHP approach is that people living with dementia can benefit from AHP-led interventions.   In this week’s blog we are sharing the AHP contribution to enhancing daily living.

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Enhancing Daily Living  teaapot

What do we mean by enhancing daily living ?

The ability to wash and dress, prepare food, use transport, engage in everyday life, do things around the house, have fun, work, study, and take part in family and leisure activities is important for overall health well-being and integral to good-quality dementia care.

People with dementia can be supported to continue to engage in the life of their community, whether that be a city, town, village, neighbourhood or care home, extracting value from their everyday participation in activities and enhancing their wellbeing. A range of evidence-informed, homebased AHP rehabilitation interventions exists to support people in their activities of daily living, with developing evidence on the role of vocational rehabilitation for those of working age.

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Why is enhancing daily living important : 5 things you need to know 

  1. There is increasing evidence about the importance of occupation and activity for people with dementia with research evaluations acknowledging that interventions individually tailored to meet people’s interests, preferences and abilities are more effective.
  2. Recreational activities provide an opportunity for people with dementia to engage in meaningful activity and meet their needs for communication, self-esteem, sense of identity and relaxation, and help to promote physical wellbeing.
  3. People with early onset dementia who are in employment can continue working with the correct support
  4. There is also a need to support family members who may wish to continue to work while in the caring role.
  5. Evidence is emerging of the positive impacts of adapting complex AHP interventions in home and community settings (particularly by occupational therapists and physiotherapists) in maintaining people’s function in the community, supporting families and carers, and increasing feelings of competence and self-efficacy, all of which can result in improved quality of life for people living with dementia 

3 ways allied health professionals CAN enhance daily living ?

  1. Valuing everyday activities

Therapeutic activities are delivered by a range of health and social care staff, third sector practitioners and volunteers with appropriate training and supervision, which is vital for the benefits of engagement in activities to be realised. AHPs, particularly occupational therapists, can play an important and collaborative role as experts in understanding the intrinsic relationship between person, environment and occupation, using assessment tools and models of practice to identify personalised meaningful activities. They can break down activities into fundamental components, develop compensatory techniques, adjust activities to individual preferences and strengths, and offer activity strategies to encourage maximum engagement. AHPs support people to remain engaged in everyday activities through a risk-enablement approach that enhances the person’s ability to retain identity and a sense of purpose. AHPs work directly with health and social care practitioners, including dementia link workers and those in the third and independent sectors, providing creative and innovative opportunities for skills-sharing, skills development and training.

2. Enhancing vocational and educational opportunities

AHPs play a central role in helping people to remain and/or return to work and manage their health and wellbeing, with many examples of vocational rehabilitation initiatives led by AHPs in partnership with job centres or employment agencies creating employment pathways. They assess functional abilities in clinical settings and workplaces to provide the most appropriate solutions to deliver long-term benefits, with many having completed extended training courses specialising in vocational rehabilitation. AHPs, particularly occupational therapists and physiotherapists, can help keep people at work by advising employees on their fitness for work and successful return, and offering recommendations to employers on modifications and reasonable adjustments to help the person with dementia remain in work (Allied Health Professions Federation, 2012). Speech and language therapists can offer advice to employees and employers on communication modifications and workplace support strategies. Postemployment support will be integral to AHPs’ roles, allowing people to consider alternative work opportunities if appropriate.

 3. AHP-led targeted rehabilitation interventions

AHPs are delivering successful AHP-led targeted interventions in people’s homes and in the community that focus on the symptoms of dementia. The starting point for AHP-led interventions is a dynamic and specialist skilled assessment. From individual assessments, often in the person’s own environmental context, personalised and tailored personal outcome plans are developed to best meet the person’s needs, aspiration and wishes, focusing on assets and strengths. The use of personalised and tailored outcome plans align with key Scottish Government policy areas, including the national post-diagnostic commitment. The rehabilitation strategies will incorporate modifying environments, simplifying tasks, establishing routines and repetitive practising of tasks, with a strong emphasis on quality of life.

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Thank you Adrienne for allowing us to share your photograph

On reflection
Thank you for taking the time to read this blog and we would like to know

  • As an AHP, how do you currently support people living with dementia in everyday activities to enhance wellbeing?
  • As person living with dementia, what support would you like to receive from allied health professionals to support you in your everyday activities?
  • As family carer, what support would you like to receive from allied health professionals to support you in your everyday activities?

We look forward to hearing from you

References

There are 33 references supporting this text which you will find in the original report and viewed here  https://www.alzscot.org/assets/0002/7356/AHP_Report_2017_WEB.pdf with all the evidence informing the policy available at www.alzscot.org/ahp

 

Connecting People, Connecting Support- How can we realise the ambitions?

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The Royal College of Occupational Therapists was keen to endorse this Allied Health Professional’s report from Alzheimer Scotland as it lays out the allied health professions offer to people living with dementia.

We are, however, acutely aware that many people cannot routinely access advice and expertise when they need it but have to reach a crisis point before getting help. That is why we welcome the ambitions within the report

  1. Enhanced access to AHP-led information, supported self-management and targeted interventions
  2. Partnership and integration, multiagency pathways and integrated models of care
  3. A commitment to clinical leadership for transforming AHP practice
  4. Innovation, improvement and research. 

How do we realise the four ambitions?

These ambitions sit well with recent work at the College. Our latest report Living not existing, Putting prevention at the heart of care for older people calls for occupational therapists to engage more directly with GPs, work with community providers to provide training, coaching and expertise to ensure all carers and staff take an enabling approach, and extend the range of their practice to giving advice, developing resources and working with communities. The report highlights teams that have already created partnerships across services to deliver person centred support.

Using a universal, targeted and specialist service model could help with the first step to realising a transformation in practice.  By considering the local population they serve, occupational therapists should ask:

pic2How do we share our expertise across the whole community of people living with dementia? How do we work in a more targeted way with specific groups of people, such as people with dementia living in care homes? How do people with dementia access individualised, specialist support?

Working with Alzheimer Scotland our working group of occupational therapists have started to address the profession’s universal offer.  At first a postcard flagging up what occupational therapy can offer and now our leaflet with top tips for staying active, taking care of ourselves and making the home dementia friendly.

The College has also developed a Career Development Framework  with a pillar on leadership, supporting occupational therapists to recognise their leadership skills and develop them fully.

 

Finally after reviewing  the local community’s  needs against current service provision we encourage occupational therapists to consider potential partners to support them to create a vision and to realise that vision. Occupational therapists are a limited resource and we need to think how best to share our expertise. Can we redesign our services so that we are addressing the three levels of need:

1.Universal: sharing information  and expertise to promote awareness and knowledge,

2. Targeted: working with groups of people to teach strategies to support people with dementia and their families to continue to live active lives,

3. Specialist: providing an individualised service for people with complex needs such as multiple co-morbidities, end of life , safeguarding , acute distress and agitation, family breakdown and homelessness?

Occupational therapists can come to one of our regional roadshows to develop ideas on service redesign. In the meantime, we hope Connecting People, Connecting Support  prompts occupational therapists to reflect and create some space to think afresh about what they offer. Occupational therapy week seems a good time to celebrate the best of what we do but also an opportunity  to think what next?

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Karin Orman, Royal College of Occupational Therapists.
Karin.orman@rcot.co.uk

For copies of the Alzheimer Scotland and RCOT top tips  leaflet contact:
Ashleigh.watkins@rcot.co.uk

 

 

 

 

 

Connecting people, connecting support

SPOTLIGHT:
Allied health professionals supporting families and carers as equal partners

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Background
Connecting People, Connecting Support is about how allied health professionals (AHPs) in Scotland can support people with dementia, their families and carers to live positive, fulfilling and independent lives for as long as possible. The document presents an evidence-informed case to support an approach to practice for AHPs working with people living with dementia – what we call the AHP approach – with the intention of promoting local integration and implementation. The full report can be viewed here  https://www.alzscot.org/assets/0002/7356/AHP_Report_2017_WEB.pdf with all the evidence informing the policy available at www.alzscot.org/ahp

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What is the AHP approach in dementia care and treatment?

The AHP approach aims to maximise the AHP contribution to high-quality, cost-effective dementia services that are tailored to the needs of individuals, reflect the best available evidence and are delivered by a skilled AHP workforce. The fundamental understanding driving the approach is that people living with dementia can benefit from AHP-led interventions.

While AHP specialists in dementia are relatively few, many more AHPs will meet and work with people living with dementia as part of their roles: the approach therefore aims to bring meaning and purpose to the work of all AHPs in relation to dementia, identifying the contribution AHPs can make to both universal and targeted AHP-led interventions.

To achieve this, the AHP biopsychosocial approach to understanding the experience of dementia and delivering AHP-led interventions – what we’re calling the AHP approach – focuses on five key elements.  In this week’s blog we putting a spotlight on the AHP contribution to supporting families and carers as equal partners

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The AHP approach

 

Supporting Families and carers as equal partnersspeech

What
This is about families and carers being fully involved in the AHP approach. They are equal partners in areas such as education and skills training as potential co-therapists, and are potential recipients of AHP-led interventions to meet their own health and wellbeing needs (developing coping strategies and accessing support to maintain their own hobbies and interests, for example).

Why
People with dementia living in the community are frequently supported by informal carers, including spouses/partners, other family members, friends and neighbours. Family carers of people with dementia have higher rates of depression and anxiety, and experience high levels of stress and distress (Petriwskyj et al., 2015). The process of taking on a caregiving role is often experienced as an unexpected and unplanned event and transition; there is a growing realisation of the need to ensure family carers have access to services that can support them (Ógáin & Mountain, 2015).

Family involvement is often the key to the success of home-based interventions and many AHP-led interventions (Pentland, 2015): individual family members are experts about the person and his or her care needs.

Family carers have the right to have their own needs met, to maintain quality of life, to have fun, and to have their hopes and dreams fulfilled. This can be supported through assessing carers’ needs, developing care plans, and promoting the social support of being connected to their local community.

Families’ and carers’ expertise and knowledge and the quality of the care they provide for the person must be acknowledged. The adverse impacts of caring can be reduced with appropriate and timely AHP support to prevent crises. It is everyone’s job to identify and support carers, and their physical and emotional needs should be considered independently of the person with dementia.

How

Families and carers as equal partners in care

AHPs develop effective strategies and involve family members in AHP-led interventions, identifying methods of working with families and carers so that the voice of the person with dementia is heard and his or her needs are balanced with those of carers in ways that do not compromise the caring relationship. Family members can provide essential knowledge about the person with dementia to inform the therapeutic process and provide feedback about the degree of therapeutic success. Their engagement is crucial in providing continuity of AHP-led therapeutic strategies within daily routines at home and in the community. Partnership-working between AHPs and families also enables skills and routines to be maintained during episodes of general hospital admission and at discharge.

Maximising families’ and carers’ physical health and psychological wellbeing

AHPs support family members and carers to maintain their existing relationships, hobbies, interests, vocational roles and informal support networks. This helps to maintain resilience, prevent social isolation and protect their physical and psychological wellbeing. Support is offered in a range of formats and topics, including personalised support on communication strategies, advice on stress management, access to up-to-date information and advice, appropriate training on equipment and access to adaptation services. Evidence suggests that positive feedback from professionals has an enormous effect in keeping people feeling positive about their caring role (Dewar & MacBride, 2015).

Joint working with health and social care practitioners

AHPs have always worked with other health and social care practitioners to support people’s rehabilitation. This continues to be a priority for people living with dementia. Assessment, interventions and family-carer support are more effective when the health and social care team works in collaborative, inter-professional ways with people living with dementia. The approach is therefore designed to be implemented within multidisciplinary, multi-professional teams working collaboratively across agency lines. AHPs work directly with health and social care practitioners, including dementia link workers, dementia advisors, and people from the third and independent sectors, providing creative and innovative opportunities for skills-sharing, skills development, joint working and training. AHPs will signpost people living with dementia to other services, such as care and repair, leisure, established community groups and voluntary services, to enhance independent living. There is also a significant opportunity for the AHP contribution to be incorporated and co-ordinated within the care home sector.

On reflection

Thank you for taking the time to read this blog and we would like to know

  • As an AHP, how do you currently support families and carers of people living with dementia?
  • As families and carers, what support would you like to receive from allied health professionals?

We look forward to hearing from you

Thank you Beth & Nancy for allowing us to share this great photograph

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References

Alzheimer Disease International (2011) World Alzheimer Report 2011. The Benefit of Early

Diagnosis and Intervention. Alzheimer Disease International, London http://www.alz.co.uk/research/world-report-2011

Alzheimer Scotland (2012) Delivering Integrated Dementia Care: the 8 Pillars Model of Community Support. Alzheimer Scotland, Edinburgh http://www.alzscot.org/assets/0000/4613/FULL_

REPORT_8_Pillars_Model_of_Community_Support.pdf

Dewar B, MacBride T (2015) Experiences of Caring for a Person With Dementia: the Perspective of the Unpaid Carer. Focus on Dementia, University of the West of Scotland

www.qihub.scot.nhs.uk/media/909969/8%20pillars%20carers%20report%20december%202015%20final%20for%20publication%2015%20december%202015.pdf

Ógáin EN, Mountain K (2015) Remember Me:Improving Quality of Life for People with Dementia and their Carers through Impact Investment. Nesta, London www.nesta.org.uk/sites/default/files/remember_ me.pdf

Pentland D (2015) A Scoping Review of AHP Interventions for People Living with Dementia, their Families, Partners and Carers. Prepared for Alzheimer Scotland. Division of Occupational Therapy and Arts Therapies, Queen Margaret University, Edinburgh

http://www.alzscot.org/assets/0002/1495/A_scoping_review_of_AHP_interventions_for_people_living_with_dementia__their_families__partners_and_carers_2015.pdf

Petriwskyj A, Parker D, O’Dwyer S, Moyle W, Nucifora N (2015) Interventions to build resilience in family carers of people living with dementia: a systematic review protocol. Joanna Briggs

Institute Database of Systematic Reviews and Implementation Reports. 13 (7), pp. 44–61.

Dementia and Mealtimes

The views of people with dementia about mealtimes

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One of the issues which has emerged from  previous Talking Mats and dementia projects is that many people with dementia experience difficulties with mealtimes and that it can affect people at any stage of dementia.

Mealtimes involve two of our most fundamental human needs, the basic physiological requirements for food and drink and interpersonal involvement. Mealtimes are particularly important for people with dementia as they may develop difficulties both with eating as a source of nourishment and with the social aspects of mealtimes.

In 2015 Joan Murphy and James McKillop carried out a project, funded by the Miss EC Hendry Charitable Trust, to gather information from the first-hand experience of people with dementia about their views about mealtimes. We ran three focus groups and used the Talking Mats Eating and Drinking Resource to allow participants to reflect, express and share their views.

Findings: 
The people who took part in this study felt that there were significant changes in their eating and drinking since their diagnosis of dementia. For some, their experience of mealtimes had changed and several said that they now skip breakfast and sometimes lunch. For some this seemed to be related to forgetting to eat and drink, for others it related to changes in taste whereas for others these meals seemed to be simply less important. Forgetting to eat was particularly noted by the participants with dementia and confirmed by their spouses.

The social aspect of eating and drinking also changed for many of the participants and, given the importance of social engagement for quality of life it is important to be aware of the effects of changes in eating and drinking on mealtime dynamics. For some it may be that they are now less interested in the social aspect of eating with others at home. Others found it hard to eat out because of distractions and lack of familiarity while some felt embarrassed about eating out in front of strangers. Others still really enjoyed going out for meals but added that they preferred to go somewhere well-known to them. The shared mealtime may be a particularly crucial opportunity for social engagement as it plays a central role in our daily lives. Social relationships are central for not only enhancing quality of life, but also for preventing ill health and decreasing mortality (Maher, 2013).

Almost all the participants talked about how their taste had changed both for food and drink which in turn affected their appetite. Some families had overcome the problem of lack of taste by going for more strongly flavoured food. When asked specifically about drinking, thirst was noted as a significant change since diagnosis
Their feelings about the texture of food did not appear to have changed significantly and was simply a matter of preference.

Three additional health issues which the participants felt were connected with eating and drinking were poorer energy levels than before their diagnosis, reduction in ability to concentrate and changes in sleep patterns.

For a copy of the full report “I don’t enjoy food like I used to ”The views of people with dementia about mealtimes” please click here http://www.talkingmats.com/wp-content/uploads/2016/01/Dementia-and-Mealtimes-final-report-2015.pdf

On reflection:

If you have other thoughts about how mealtimes are altered when living with dementia please let us know and we can collect comments for another blog to share with others. Email – info@talkingmats.com

Our author for today:
Joan Murphy
Co-director, Talking Mats
@talkingmats

I am a Research Speech and Language Therapist and Co-director of Talking Mats Ltd which is a not-for profit Social Enterprise based in Stirling, Scotland. I worked with people with communication difficulties with the NHS for many years and have also carried out research at Stirling University. I have led a number of research projects and have a wide portfolio of publications. Together with my colleagues, I have developed Talking Mats® into a well-respected communication framework, which is used worldwide with people of all ages, abilities and backgrounds.

For further information about Talking Mats see our website: www.talkingmats.com

Other useful information and resources

Kellet, R. E. (2012). Communication and Mealtimes Toolkit: Helping people with dementia to eat, drink and communicate. Retrieved from

http://www.nhsdg.scot.nhs.uk/Departments_and_Services/Speech_and_Language_Therapy/Adult_SLT/Documents/Communication___Mealtimes_Toolkit_for_Dementia_2013.pdf

Let’s talk about dementia: speech and language therapy in dementia. (2015). Retrieved from Let’s talk about dementia: https://letstalkaboutdementia.wordpress.com/2015/03/05/speech-language-therapy-in-dementia-dispelling-some-myths/

Thank you to Joan and colleagues for allowing us to share a previous blog post, originally posted at http://www.talkingmats.com/dementia-and-mealtimes/

Let’s Talk about Dementia & Self-Directed Support

Hello, my name is Laura and I am the Self-Directed Support Manager in Alzheimer Scotland. It is my job to help people living with dementia and their families and carers to get more choice and control when they are accessing support via social work.

Self-Directed Support is a new piece of legislation that came into force in April 2014 and that legislation says that people should have more power, choice and control over the support they get. Scotland also has a ten year strategy for implementing Self-Directed Support and we are already over seven years into that strategy.

We know that many people still don’t know about Self-Directed Support and what benefits it might offer them. That is why myself and my colleague, Margo Sweeney, a Dementia Advisor in Glasgow, are working together to promote Self-Directed Support directly to people who haven’t had the opportunity to explore it before.

Information Cafes

As an experienced Dementia Advisor, Margo regularly organises Cafes for local people living with dementia and their family and friends to come together; to socialise and get accessible information and advice in a very informal way, and at a pace that suits them.

Margo felt quite strongly that occasions like Cafes would be the right environment for starting conversations about Self-Directed Support. However, she was equally keen that the Cafes should remain totally focussed on peer support, without agendas and speakers undermining this important ethos.
Therefore Margo and I have worked together to develop opportunities that have felt very close in format to a Cafe but with the upfront offer that I would be available to provide information and answer questions about Self-Directed Support. We put a bit of thought into how we would promote these events to people. To date we’ve described the events as Information Cafes. We chose this description to try and engage with people who may be very wary of participating in an activity that is described as a ‘meeting’ or a ‘workshop’. We have been keen to try and engage with people who may have never been to a meeting or sought help from Social Work in their entire life – to try to be as inclusive as possible.

We are very clear in the invitation that the event is about thinking about help people might need and getting information about how to access that. If you’ve never heard about Self-Directed Support before, met a social worker or had an assessment, the language and the event format are very important. If it’s overwhelming or unintentionally intimidating, people will feel put off, not empowered. We do mention Self-Directed Support but we make sure there are enough other plain English terms in there that will attract people with dementia and their family and friends to attend. Oh and we also emphasise the cuppa and cake!

We have been promoting the Information Cafes to people who have come to the Glasgow Dementia Advisors with enquiries or to people who regularly attend Cafes and other activities in Glasgow. As should happen with a genuine pilot project, we’ve had mixed results. The first event we ran at Bridgeton Resource Centre in November 2016 had over 20 attendees and there was a real buzz about the session. On the other hand, only one person turned up to the second session in February 2017. However, we got to have such an in-depth conversation with her and we were able to really tailor the information to her specific situation. There is such a value in that because trying to explain Self-Directed Support in very general terms can seem meaningless and vague. It’s much better to have quality conversations about someone’s life and relate Self-Directed Support to that.

With that in mind, Margo and I encourage people to follow up with either of us, if they want to explore Self-Directed Support a bit more in future. We try to be really clear that it’s ok if people don’t feel like they “get it” the first time they hear about it.

We’ve had many quality conversations with people at Information Cafes about Self-Directed Support. When we had explained the new Self-Directed Support legislation to one woman, she was quite perplexed and asked us, why, if SDS was such a big change that people had to know about, had there never been TV adverts to promote it, like there were with Power of Attorney. We think this is a very good question….

After hearing other carer’s experiences shared at the Information Cafe, a second carer told us:

“Until today I thought it was just me getting nowhere with getting any help from Social Work. I thought I was doing something wrong and it was my fault. But now I realise you’re all having the same problem.”

During really good conversations is a great time to raise the topic of Self-Directed Support so I do also try to attend Cafes at other times, so people get used to seeing me and so they are reminded about Self-Directed Support, even if in a very subtle way. I get the impression that for some people, I’m the woman who reminds them of that thing they need to get round to doing. We need to respect the fact that timing is key for families affected by dementia. People need to have access to information and then be encouraged to follow up with us when the time is right for them. We are talking about increased choice and control, after all.

We have also started to invite external colleagues from Glasgow Centre for Inclusive Living (GCIL) to our Information Cafes. GCIL provide support to people in Glasgow who are organising their own support. They provide advice and have many years of experience of supporting Personal Assistant employers. A representative from GCIL has attended one of our Information Cafes and talked about their potential role supporting people living with dementia, as well as providing useful information resources.

GCIL are a key organisation in Glasgow for people who direct their own support and we are really keen to work in partnership with them. We want people with dementia and carers to know about them and get to know what services they offer. When people with dementia and carers feel the time is right for getting more support, we want them to know about as many local allies as possible.

Sharing ideas

Margo and I wanted to share what we’ve been doing in Glasgow and to find out if other people and organisations are trying similar things. It’s good to share what is happening and what works (and what doesn’t!).

We don’t think what we are doing is rocket science or by any means perfect. We are trying things and tweaking them as we go, reacting to how things play out. We do know that explaining Self-Directed Support can be complex and different messages work for different people. We’ve been struck by the number people who may have literacy issues. Providing face to face, well-paced information is really important. This reinforces the need to provide personalised support at every stage.

We are just trying to create as many opportunities as possible to visit and revisit Self-Directed Support for people who might not have it on their radar yet. We want to keep building on this work, reflecting further on what does and does not work and adapting it as needed. We very much want to look at ways of actively involving people living with dementia in discussions about Self-Directed Support as early as possible in their diagnosis – to support their involvement in planning ahead for how they wish to be supported in the future.

The reality is that the barriers, delays and obstacles faced by people who are trying to access Self-Directed Support make this very difficult to achieve. We hope through our ongoing informal conversations promoting the rights of people with dementia, to be able to collect ‘case studies’ as evidence to challenge the unacceptable barriers that people are encountering.

We must never forget that the power, choice and control should lie with the person with living dementia. We all have a long way to go before we see Self-Directed Support delivering as it should for supported people in Scotland but this is what we are trying in this patch.

As well as the work I am doing with Margo, I’m also working with many Dementia Advisors, Link Workers and other internal and external colleagues across Scotland to promote Self-Directed Support to more people living with dementia and carers. We are trying different things in different localities, depending on what we think might work.

Let’s talk self-directed support

I’m also keen to hear from anyone else who is interested in promoting Self-Directed Support to people with dementia and we can have a chat about where to start. We know lots of people are already out there doing this work; we look forward to hearing about your experiences; the pitfalls and the successes!

See also

This booklet on Self-Directed Support is for people with dementia, their families, friends and supporters. Professionals should refer to the latest Scottish Government guidance on operating self-directed support schemes at http://www.selfdirectedsupportscotland.org.uk

https://www.alzscot.org/assets/0002/5189/SDS_Leaflet_FINAL.pdf

This week’s blog is by :

Laura Finnan Cowan
Self-Directed Support Manager
@Lafinnco
As Alzheimer Scotland’s Self-Directed Support Manager, Laura’s job is to help make it easier for people living with dementia to access Self-Directed Support. Laura can support individual enquiries, give talks and info sessions about Self-Directed Support to groups and provide advice and training to professionals.

Scotland’s Dementia Awards #SDA17

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On the 21st September we celebrated the sixth Scotland’s Dementia Awards. These awards celebrate and recognise projects and teams who demonstrate innovation, creativity and best practice in the support of people with dementia and those who care for them. The awards are a partnership between Alzheimer Scotland, NHS Education for Scotland, NHS Health Scotland and the Scottish Social Services Council. 

WINNER: Best Acute Care InitiativeImproving the journey for people with dementia in the acute hospital setting – a collaborative approach. NHS Forth Valley

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This NHS Forth Valley project aimed to improve the acute hospital journey for people with dementia by reducing the number of late and/or multiple transfers a person experienced. It involved collaboration across various specialities, with all teams working towards a shared goal. Through this way of working the team have managed to significantly increase the number of people with dementia transferred before 8pm (from 52% to 92%) and reduce multiple moves from 33% to less than 2%. As a result, they have evidence of improved patient, carer and staff experiences with regards to this area of care.”

WINNER: Best Innovation in Continuing Care GAME. NHS Ayrshire & Arran with ‘Onside Ayrshire’ Community Resource

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“In relation to hospital care for older people, person-centred care, quality of life, compassion, dignity, respect and maintaining independence are vital. In ward 3 at Woodland View, we recognised there was a variation in our approach to supporting person-centred care in assessing… and planning meaningful activity. Our improvement project focussed on working with families, carers and patients, with the aim of improving quality of life and meaningful outcomes for people with dementia using the Pool Activity Level (PAL). The project team developed a bundle approach to support effective implementation of the 5 key elements of the PAL instrument; personal history, assessment, identification of activity level, activity plan, and review of the plan.”

WINNER: Best Community Support InitiativeBoogie At The Bar. The Active Aberdeen Partnership, The Foundry, Aberdeen Health & Social Care Partnership, Alzheimer Scotland and M&S Bank.

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“Boogie at the Bar is a dementia-friendly afternoon disco at The Foundry pub in Aberdeen. It started after a conversation between Anne Duncan, whose husband Bill was diagnosed with dementia in 2011 and Paula Bisset, Development Officer with Sport Aberdeen. Anne and Bill love to dance, but they didn’t want a tea dance – they wanted to go to a disco!

“Anne then met with Sport Aberdeen, The Wellbeing Team (Aberdeen City Health & Social Care Partnership), Aberdeen Football Club Community Trust and Alzheimer Scotland. AFCCT suggested The Foundry and Alzheimer Scotland involved the local Branch of Marks & Spencer Bank (who provide the food). Boogie at the Bar is a chance for people with dementia, carers and relations to come together, enjoy a drink and dance with old and new friends. The dance floor is never empty!”

WINNER: Best Dementia Friendly Community InitiativeRelaxed Checkout. Alzheimer Scotland and Tesco Forres

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“The Relaxed Checkout began with Tesco Forres staff finding out more about dementia by becoming Dementia Friends. It was designed to be inclusive for anyone who might need more time. This initiative has captured the attention of the media and has resulted in global approval, with media coverage in the USA, Canada, Australia, New Zealand and beyond. The BBC Facebook post has been viewed over 11 million times. The idea has already been replicated in supermarkets in Lockerbie, Annan and Barnstaple, as well as supermarkets in America.”

WINNER: Most Innovative PartnershipDementia Awareness Within HMP Shotts. Alzheimer Scotland and HMP Shotts.

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“Prisoners have a higher rate than the general population of several dementia risk factors, including head injury, smoking, drug and alcohol misuse, and low educational attainment. However, there has been very little research into dementia in prison; we do not know how many people are… living with dementia in prison and we know very little about the experience of living with dementia in prison from the perspective of the person, their visiting family and friends, or staff. Over the last 18 months, this project between HMP Shotts and Alzheimer Scotland engaged 202 prisoners and 55 staff in dementia awareness and information sessions and 40+ family/ friends within the visitors’ centre.”

LIfetime Achievement Award: Henry Rankin

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Former Committee Member and former Chair of the Scottish Dementia Working Group. Longstanding dementia campaigner. Find out more about Henry – Living and Learning with Dementia.

The Sunday Post digital team came along to the event and filmed some great short videos with the winners. Meet the winners from Scotland’s Dementia Awards 2017  Watch them here.