Living well with dementia: diagnosis is key

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Today kicks off Dementia Awareness Week in Scotland. Richard Baker, Team Leader of the Age Scotland Early Stage Dementia Project, which is funded by the Life Changes Trust, talks about tackling the stigma and how early diagnosis is key to living well with dementia.

This week Age Scotland will be joining Alzheimer Scotland and other organisations working for better support for people with dementia to promote the need for better support and early diagnosis.

This is a key concern for Age Scotland through the work of our Early Stage Dementia Project, supported by the Life Changes Trust. Early diagnosis for someone with dementia can make a huge difference to their ability to live well with the condition. The Scottish Government has made dementia a national priority, and as part of this has introduced a commitment to provide one year’s support for everybody who has been diagnosed with dementia for a year after their diagnosis. This support is provided by link workers who help people with dementia understand the illness, manage symptoms, maintain their connections with their local community and help them make plans for their future.

However, while there is a huge amount of work going on to raise dementia awareness and tackle stigma around the illness, there is still a huge amount to do. Depending on the measure used, either a third or a half of people who have dementia in Scotland have not yet received a diagnosis. A UK survey by the Alzheimer Society found that more than half of people seeking a diagnosis for dementia have delayed going to their GP by at least a year and nearly two-thirds of people fear a diagnosis would mean that their life is over.

But people can and do live well with dementia, and support in the early stages is crucial to ensuring this can happen. That is why it is so important to tackle myths and stigma around dementia and make more people aware of the benefits of early diagnosis. At Age Scotland we meet people with dementia who are still contributing to their communities and are the leading voices campaigning for improved dementia services. Their example shows that if people take early action if they are worried about their memory or struggling with other activities, they can still have a rewarding life even if they do receive a dementia diagnosis. Dementia Awareness Week is a great opportunity to highlight this message, and it is vital the work to make all our communities dementia friendly and dementia aware continues all year round.

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Age Scotland’s Early Stage Dementia Team

To find out more about Age Scotland’s work around Early Stage Dementia visit their website or contact Richard Baker at Richard.Baker@agescotland.org.uk

Age Scotland

 

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Peer support and care experienced young people

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Earlier this year, we held the first gathering of our six Trust funded Peer Mentoring projects for care experienced young people.

At the Trust we believe that positive relationships are vital for all of us, supporting our emotional and mental well-being. They are also key to developing our own identity and self-worth.

The power of human connection is often underestimated and I think if we are all honest, at some point in our lives we have been guilty of taking our relationships for granted, whether that be with our friends, colleagues, or family members. I have been fortunate that, throughout my life, I have had support, unconditional love, advice, and encouragement at my fingertips. Since being with the Trust I have become more and more aware of how this has shaped my life. I have always known that it helped me but I don’t think I ever appreciated to what extent. Now, I cannot begin to imagine where I would be without it.

The Trust’s investment in mentoring is recognition that not everyone has had access to consistent, supportive and positive relationships throughout their lives. We’re supporting peer mentoring as one means of increasing the opportunities for care experienced young people to have positive relationships, because young people tell us this is a big gap area.

We think that if young people can widen their social connections, this could open the door to lots of other opportunities.  shutterstock_121861366

It is centred upon providing opportunities for stable and supportive relationships for care experienced young people to help them build loving, healthy, interdependent relationships in the future.

Peer mentoring is aimed at providing one-to-one support in a relationship which is entirely voluntary on both sides, as with mentoring more generally. However, the added element is that both the mentor and the mentee will share one or more characteristic.

The gathering of the Peer Mentoring projects at the end of March provided the opportunity for representatives from each of the projects to come together to share their progress, what they have learned and the challenges they have faced during the first six months of their projects. There was also space to share ideas around other topics including the secrets to successful mentoring matches, training and development for mentors and the support available for both mentors and mentees.

While the projects are all at different stages, and they have varied experience of mentoring, they have each made good progress in the first six months, including recruiting staff, developing training materials and the recruitment of mentors and mentees.

Some organisations are new to focusing specifically on care experienced young people, which brings new opportunities to raise awareness and build understanding of care experienced young people at community level.

There have been some challenges in reaching prospective mentors with care experience who are ready to take on a mentoring role, which has sometimes meant projects adapting their recruitment methods and criteria. Feedback from the day highlighted that the space to discuss some of these challenges was particularly useful for the projects, and the Trust hopes to continue these gatherings in the future.

For me personally, it was fantastic to see the passion that all of the people working on these projects have for peer mentoring and our shared belief that it will make a profound difference to the lives of care experienced young people. Their willingness to share their learning with each other and the Trust, as well as be open to learning and trying new things, was particularly exciting and we look forward to hosting the next gathering in October.

Catriona

Catriona Kelly, Programme Officer, Care Experienced Young People Programme

* Our six funded peer mentoring projects are being delivered by Barnardo’s, Move On, The Rock Trust, Up-2-Us, Ypeople and Y Sort It.

A day in the life of a peer mentor co-ordinator

A few weeks ago, we posted a blog which described a day in the life of a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  This blog describes a day in the life of by Hazel Waddell, who co-ordinates the peer mentors for VOCAL. VOCAL provide peer support to carers of people with dementia. This service is one of the Trust’s 12 funded dementia peer support and befriending projects.

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My role at VOCAL is quite complex as I wear a few hats as Carer Support Worker.

One of the newest bits of work I am involved with is VOCAL’s peer mentoring project.  We had a very small pilot of this kind of work about 18 months ago and have relatively recently been awarded Life Changes Trust funding to further develop this work to support a much larger number of carers of people with dementia.

The pilot was led by my line manager and we are working together to develop the work further. Today we met to plan the recruitment of a few more carers to become mentors.  We have already trained a group and as they are settling well into their roles well we are looking to expand the team to make it as diverse as possible.  While there is lots of common ground in people’s stories, we are keen to ensure we have a good mix of male and female, ages and caring relationships and experiences to ensure the best possible service for clients.  At today’s meeting we discussed approaching a few carers who have used VOCAL’s services previously to ask if they would be interested in sharing their stories in this way.

Next on my peer mentoring to-do list is to log in to our case management system to see if my Carers Support Worker colleagues have made a referral for a mentor.  There are two referrals waiting for me which is not too much of a surprise as everyone in the team is able to see the benefits to carers of being mentored by someone who has lived experience of caring for a family member with dementia.

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The Carers Support Workers who have made the referrals have read the mentor profiles and suggested the mentor they think would be the best fit for their client’s needs and have listed the times that suit their client the best.  This is great and it means I can make contact with the mentors to see if they are free to meet (as always checking that the carer and mentor don’t live too close together or know each other in other parts of their life) and book a room here at the Carers Centre (the mentors and carers always meet at the Carers Centre for their first meeting and then after that meet in cafes).  I send the mentors emails and wait for replies.  This should not take too long as they are very good at responding (once again I think how helpful smart phones are to our work!).

Next I switch hats and contact some of the clients I am working with as a Carers Support Worker. I really enjoy the carer support work and I think it really helps me with my peer mentor coordinator role as the work, while different to the mentoring role, has some similar lessons, pleasures and challenges, all of which I can use to support the peer mentors.

By the end of the day I have heard back from both mentors and have scheduled their meetings for next week.  I have also checked the case management system and am pleased to see that all the mentoring meetings for last week took place and I can see from the case notes the mentors have made that there were no issues that they are seeking my support with.

VOCAL’s Training Officer will be pleased that one of the mentoring clients is also interested in attending one of our stress management courses and that the mentor has booked them a place.

I draft a few notes for next weeks mentors team meeting and head home, happy in the knowledge that the work we do helps provide vital support to carers from someone who has walked in their shoes.