Connecting People: Twitter – a beginners guide by beginners

What is twitter? Wondering what to include in your profile or what to include in a tweet?  How do you send a tweet and what should you include?

These were just some of the questions being answered in this week’s blog. We are sharing a slide show with dialogue from our occupational therapy interns (2016) Marianne and Rachel – as just one of the many projects they developed with and for the Scottish Dementia Working Group. Sit back and enjoy (if the slideshow below does not work on your computer you can also access it here):

We welcome any comments and do let us know what you would have shared in your beginners guide to twitter.

@S_D_W_G working hard at their Tuesday IPad class.

12 Helpful Hints

Communicating with someone who has dementia

What can someone with dementia feel?

Imagine if you were to lose the ability to say the right word or understand what was being said, eg when on holiday in a foreign country where you don’t speak the language. You may feel frustrated, angry and look for help, perhaps to someone to interpret for you. You might respond by not speaking at all and withdrawing into yourself of avoiding situations where you have to communicate with people.

Here are 12 Helpful Hints for communicating with someone living with dementia.

1. Be calm and patient.
2. Face the person, speak clearly and slowly.
3. Make sure that you have their attention by gently touching their arm and saying their name.
4. Use short, simple sentences and say exactly what you mean.
5. Try to get one idea across at a time.
6. Allow plenty of time for the person to take in what you say and try not to reply.
7. Try not to confuse or embarrass the person by correcting them bluntly.
8. Use questions which ask for a simple answer.
9. Don’t ask questions which test their memory, e.g. ‘Who am I?’ or ‘What did you do yesterday?’.
10. Talk about familiar people, places and ideas.
11. Use the names of the people you are talking about instead of ‘he’ or ‘she’. It will remind the person of who you are talking about.
12. Use facial expressions and hand gestures to make yourself understood.

A Person with Dementia May Also:

• Feel under pressure because they can’t cope as well as they used to.
• Feel that their independence and privacy are being take away.
• Think that they are being judged for making a mistake.
• Be frightened by too much noise, too many people or a change to their routine.
• May already have poor hearing and eyesight which can be made worse by their dementia.

Don’t forget – Actions speak louder than words!

A smile, touch or gesture can be just as important in getting the message across and showing that you care. Sometimes holding the person’s hand when you talk can be very reassuring.

The leaflet this post is based on was originally compiled by Nicky Thomson, Good Morning Project Ltd and the North Dementia Forum, 2009.

“Rugby Memories: a personal story”

Supporting people living with Dementia, and their families through sporting reminiscence

As well as being a registered Dietitian currently working for Nutricia, I am also a busy mum of 2 and a carer for my Dad who has Advanced Dementia.   Throughout the past 8 years I have supported my dad in many ways, including keeping him socially active, which became more and more of a challenge as his condition progressed.  One area that has continued to stimulate Dad and help us connect with one another is Rugby Memories.

Rugby Memories is part of Alzheimer Scotland’s Reminiscence Network, where we have groups in Hawick, Inverkeithing, Langholm and West.  This innovative project uses sporting images and memorabilia to stimulate memories, boost morale and self-confidence and help individuals reconnect with the sport they once loved.  Other sports involved are golf, shinty, cricket and now old movies.  Rugby was dad’s sport, and so much part of his past as an ex-Internationalist, so I hoped that he could benefit from becoming involved. Two and half years on, we are still attending the monthly meetings at his old club West of Scotland RFC.

Sessions last approx. 90 mins where we look at photos mainly from 1945 – 1980 to aid recall and stimulate dialogue.  The atmosphere is calm and relaxed and the volunteers do an excellent job in encouraging conversation.  This results in some amazing stories of games, players, tours etc. and conversation can flow in many directions.   Sometimes, we have a specific topic – the best Scottish team of the 70’s etc.

For individuals of all stages of Dementia, Rugby Memories encourages social connections when this part of their world in shrinking, for my Dad, in the earlier days, it meant his friends had a platform to communicate with him, and he was more open and animated to share in Rugby stories. For me, I am continuing to learn about his career, and share in these fascinating stories.

Now with limited speech, Dad struggles to communicate verbally, but becomes more animated and relaxed when we attend Rugby Memories.  His eye contact is exceptional as he smiles and laughs recognising himself and his peers in old photos, and enjoying the banter that goes on.   For me, we remain connected in a father – daughter relationship, and for Michael White, Project Manager and his team, this is what makes it all worthwhile.

Back in the care home where Dad now lives, we have a Rugby Memories book, which contains a selection of his favourite rugby photos as well as some family ones.  This means that Rugby Memories can continue to support him in-between organised meetings.  Again the effect can be quite amazing, as it relaxes him as he starts to recognise himself and others.  A short 1:1 with Rugby photos may only take 5 – 10mins but the calming and positive effects can last most of the day.

Now as a member of National Dementia Carers Action Network (NDCAN), I’m also on the Football Memories Steering Group, where we are currently looking at how best to evaluate this project, to support more clubs and care homes to provide sporting reminiscence, to those with Dementia and their families.

If ruby played an important part in your family life, you can find out more about the rugby memories by following the face book page https://www.facebook.com/pages/Memories-Rugby-Football-Club/312378075572550?fref=ts. I have also included information about Alzheimer Scotland reminiscence network to, I hope you find it helpful and thank you for taking the time to read my blog.

Alzheimer Scotland Reminiscence Networks (ASRN) was set up to support people living with and affected by dementia through participation in therapeutic intervention based groups. Originally set up as Football Memories, it was soon realised that there was an interest and demand for similar projects but with a focus on different interests. We now hold therapeutic sessions for football, rugby and shinty – with plans to include cricket, golf and even movie memories. You can find out more here http://www.alzscot.org/asrn

Lynne Stevenson, External Affairs Advisor for Nutricia Advanced Medical Nutrition.

@lynnekstevenson

I work with charities and key stakeholders to build credibility in Medical Nutrition, with an overall vision to have nutrition integral to healthcare.  I joined the BDA Scotland Board in July 2015, where we are all working together to raise the profile of Dietetics in Scotland, supporting our members and leading and shaping new models of Dietetic practice for the future.   I joined NDCAN, National Dementia Carers Action Network Group in June 2015.  In NDCAN, we all have personal experiences of caring for someone with Dementia, and are committed to campaigning and lobbying to improve the lives of those with Dementia and their families.

6 points to consider before talking with someone who has a learning disability and their partner about dementia

In sickness and in health

Dementia does not discriminate. We are all aware of, or have experienced first-hand, the stress and distress caused when one person in a relationship receives a diagnosis of dementia. The subsequent impact on both this individual and their partner cannot be underestimated with recognition needed of the specific requirements of both.

Now imagine that this is a relationship between two people with a learning disability. How do you start a conversation about dementia with the person who has the diagnosis, let alone their partner? Dementia doesn’t discriminate, but neither does love.

Here are the first 5 points to consider:

1. Don’t assume that both people in the relationship need the same information at the same time, or in the same format.
2. There may be a sense of relief for both partners at knowing something is wrong.
3. Relationships will change; the health and wellbeing of the partner should not be overlooked especially as dementia progresses.
4. The diagnosis should not stop someone, and those close to them, from continuing to do things that they enjoy.
5. Friends of the couple may not know what to say or do.

I can hear you asking how this is specific to people with a learning disability and how it differs from couples in a relationship generally. Well of course it isn’t different at all. Yet, we are so much more likely to respect the wishes of, and acknowledge the points above, for couples who do not have a learning disability.

Why do we find this so difficult when the individuals involved have a learning disability? There is a misconception that people with a learning disability lack the capacity to marry or to have intimate relations, but that is a different blog post.

There are two main differences when we have conversations about dementia: firstly, I often hear ‘she wouldn’t understand’, ‘I don’t want to upset him’, ‘we don’t know what to say’. This means that the person with the diagnosis is not even given an explanation of the changes they are experiencing – although the word dementia does not need to be used if the person has no understanding of it.

Secondly, the relationship is not acknowledged, with the partner not always recognised or included in conversations and decisions.

This leads me to point six:

6. Jenny’s Diary has been specifically developed to support conversations about dementia with a person with a learning disability, their partner and friends.

This new free resource developed in collaboration with staff and customers at Hansel, Ayrshire, Scotland features actors with a learning disability playing key roles. It takes a pictorial approach to supporting conversations about dementia and introduces a four-stepped approach to talk about the diagnosis with Jenny and with her partner, George. Points 1-5 above are included and acknowledged.

People with a learning disability already face obstacles in their relationships; everyday things that other couples take for granted. Let’s respect these relationships rather than add to the obstacles.

How can I get a copy?

Jenny’s Diary is freely available online or as a printed copy on request from Karen Watchman. Your feedback is very welcome.

Further information

My website about learning disability and dementia with additional information and resources can be found here

Jenny’s Diary was developed with support from Alzheimer’s Society Dissemination grant by Karen Watchman, University of the West of Scotland, Irene Tuffrey-Wijne, St George’s University of London & Kingston University and Sam Quinn, University of the West of Scotland.

Dr Karen Watchman, Alzheimer Scotland Lecturer in Dementia and Depute Director of the Alzheimer Scotland Centre for Policy & Practice, University of the West of Scotland.

@karenwatchman

The Alzheimer Scotland Centre for Policy & Practice is a partnership with University of the West of Scotland conducting applied research and developing education and social enterprise initiatives. As former Chief Executive of Down Syndrome Scotland, I have worked in the field of dementia care and learning disabilities for many years in both practice and academic settings. I have produced a range of accessible and evidence-based information for people with a learning disability and carers including Supporting Derek, and am a member of the programme team delivering the MSc Later Life Studies at UWS.

 

 

Kick off 2016 with a relaxing break – grants available!

For people and families living with dementia a break from the day-to-day challenges of life can be a welcome relief.

Our Creative Breaks grants give you the chance to apply for up to £300 towards creating an enjoyable experience. Working with Shared Care Scotland we’re offering financial assistance to help people in Scotland with dementia, their family, friends and carers access a well-earned break.

The aim is to improve the well-being of carers and the people they care for by supporting the financial aspects behind a relaxing break, or activities and equipment that will help relieve the everyday stresses of supporting someone with a diagnosis of dementia.

Are you eligible for a Creative Breaks grant?

• Are you caring for someone with a diagnosis of dementia?
• Do you need a short break?
• Have you not had a short break in the past 12 months?

If you answered ‘yes’ to the above, you may be eligible to apply for a Creative Breaks grant. The break could be a holiday, or it could help pay for a photography course, or getting in a bit of support to be at that one off event or outing. It’s up to you. What would make a difference to your family?

More info Visit our website to check eligibility and download an application form.

 

Dementia Advisor / Creative Breaks Coordinator 

@angi_inch