Living well with Young Onset Dementia Newsletter Issue 8

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1 Living well with Young Onset Dementia Newsletter Issue 8 August 2017 Welcome to this months Newsletter. It s been lovely to see so many of you over the past few months at Connection Point and the Al s Café support meetings across the county. In our Dementia Voice Meeting we ve been very busy with a number of pieces of work. One of these has been developing an Accessible Summary Version of the much lengthier report that came out of The Young Onset Dementia Review Event back in March. This is now available to view at: mental-health/oamhservices/dementia/young-onset-dementia-new/otheruseful-links/ If anyone would like a paper copy of the document then please drop Rachael or Jo and or give us a call and we ll drop you one in the post. Update: Group Walk at Croome Park Saturday 23rd September 2017: Spaces are filling up on our planned group walk around beautiful Croome Park on 23rd September. If anyone is interested in joining us please register with Rachael by 8th September Rachael s contact details can be found at the end of the Newsletter. Sponsored Bike Ride/ Evesham Cycle Fest: Adam, Tom and Jim are training hard for their Sponsored Bike Ride from Malvern to Croyde Bay this autumn. They are kindly donating the money they make to The Young Onset Dementia Trust Fund Worcestershire. Adam has set up a Just Giving page: or test to donate code MTOC61 to Evesham Cyclefest (3rd September) are also kindly raising funds for a number of local organisations who support people living with dementia and their families. To find out more visit: Thank you to you all. News and Information Pathways through Dementia: We thought it would be helpful to let you know about this free service. The service focuses on the legal aspects of supporting people living with dementia and their families. They specialise in advice on: Paying for Care Managing finances the role of the Court of Protection/ Lasting Powers of Attorney/Deputyship orders Welfare benefits Community Care Laws which can help empower people living with dementia and their families They have a helpline which operates flexible hours: response within 5 working days: swilcox@pathwaysthroughdementia.org

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3 Connection Point Connection Point Offers: A regular and on-going point of contact for people living with young onset dementia and their family; enabling access to timely advice, education, support and information. The opportunity to talk to professionals and services to increase knowledge about local support and how this can be accessed. Opportunities through formal and informal education and information sessions to address a range of issues that may influence health and wellbeing. To meet with peers for mutual support and companionship. The chance to participate in some fun and relaxing activities to enhance well-being and enjoyment. Connection Point meets at Ombersley Memorial Hall 7pm to 9pm, on the 2nd Thursday in the month. Each evening has a themed speaker and relaxed and fun activity. September 14th For the first part of the evening Alison Willis (Dental Health Coordinator) and Dr Sol Sadaghiani (Consultant Psychiatrist) will discuss Top Tips for Dental Health. Snoezelen Art will be joining us so we can get creative with some art work. Family Voice will also be running during the second part of the evening. October 12th Andy Wheeler from Disability Sport Worcester will be joining us for the first part of the evening to discuss access to sports. For the second part of the meeting Freedom Leisure will join us for a gentle exercise activity. We look forward to seeing you. The Dementia Engagement and Empowerment Project Dementia Voice The group meets once a month in the Community Meeting Room at Waitrose in Worcester (the first Thursday of the month mornings). The group is for younger people who are living with dementia. The group has been involved in a number discussions we met with Matt Rogers from Freedom Leisure to talk about Leisure facilities being more accessible to people living with dementia. We put together an application for funding and have been awarded a grant to continue running Dementia Voice which is fantastic. We will be celebrating the first year of running the group with a trip to Spetchley Gardens in early September. Family Voice Runs alternate months at Connection Point (the next one will be in September). The work that has been completed on a small booklet What If? to stick on your fridge with emergency contacts has been completed. It is being taken to the trust Dementia Steering Group Meeting in August for final approval. We have been discussing the very significant challenge of access to appropriate day support services and respite (replacement) care. Staff from Clinical Psychology, The Admiral Nursing Service and Worcestershire Association of Carers kindly join this meeting to provide advice and support. If you would like more information about these groups please contact Jo or Rachael (contact details at the back of newsletter).

4 Useful Service Information Admiral Nurses Admiral Nurses are registered mental health nurses who specialise in dementia nursing. They offer a county wide service supporting families throughout their experience of dementia using interventions tailored to each family s individual needs and challenges. Admiral Nurses can be contacted from Monday to Friday (excluding bank holidays) between the hours of 10am and 2pm on Tel no: or WHCNHS.admiralnurses@nhs.net. Als Café - for younger people with dementia and their families For people diagnosed under the age of 65 or living with probable diagnosis under the age of 65 and their family members and friends. The dementia café provides an opportunity to meet regularly in an informal, social environment to talk to other people living with dementia and families/ friends. The café also provides information about dementia, local services and practical information about living well with dementia. Please come along where you will be given a very warm welcome. For more information call Alzheimer s Society on: AL s Redditch Last Wednesday 7.00pm- Oasis Centre B97 4QB Co-ordinator 9.00pm 4 Plymouth Road Gill Read Redditch AL s Worcester Second Monday 7.00pm- 9.00pm Sanctuary Group, Chamber Court WR1 3ZQ Co-ordinator Jo Weir AL s Kidderminster Second 7.00pm- Franche DY11 5QA Co-ordinator Wednesday 9.00pm Community Church Helen Attree Chestnut Grove

5 Age UK Herefordshire and Worcestershire - Dementia Advice Service The Dementia Advice Service offers information and advice to people who are living with dementia, as well as their family and friends. The dementia advisor may, for example, give information about benefits, power of attorney, driving, and practical tips on living well with dementia. They are also able to discuss other services which may be of interest and, if needed, make a referral to them. The dementia advisor continues to be an on-going point of contact for as long as needed. You are encouraged to contact the service even if nothing is needed at the time, so that you know who your dementia advisor is. This service is free and is available to people living with dementia who live in Worcestershire (or have a Worcestershire GP), as well as their family and friends. Further information can be found at: Contact details: Age UK Herefordshire & Worcestershire Malvern Gate Bromwich Road Worcester WR2 4BN telephone or dementiaadvice@ageukhw.org.uk Benefits Forms If you think it may be helpful to have some support with completing benefits forms you may be able to arrange this via your local Age UK Office or The Citizens Advice Bureau. If you are planning to do this it can be helpful to book an appointment to arrange this help, and to then make arrangements to order your forms. When forms are sent out they have a date on them for when they have to be returned by, so it s often easier to ensure you have arranged some help before ordering your forms.

6 Worcestershire Advice Network is a partnership of local advice agencies working together to provide advice and information. The service is free, confidential, impartial and independent. We can help you: Access information and advice about issues that affect every day lives such as housing, debt advice, benefits and maintaining financial independence Understand how care and support services work locally, the care and funding options available and how you can access care and support services Our partnership contact details are below. Whoever you contact we will ensure you are directed to the right source of help for your problem.

7 ConnectED One to One Support Service for People living with Young Onset Dementia This service is provided by Onside Advocacy and supports people who live with a diagnosis of dementia at a younger age to continue with enjoyable interests and activities. ConnectED will also support people to discover new interests. A mentor will be matched with you and your interests and will spend time with you based on an assessment of your needs and wishes. You can contact Onside by: Post: Onside Independent Advocacy, Williamson House, 14 Charles Street, Worcester, WR1 2AQ Telephone: info@onside-advocacy.org.uk Web : Would you like to get in touch? If you would like to hear more about the work that is underway, get involved in the working groups, comment on what we have done, or influence our work in some other way please Jo Scarle on Joanne.Scarle@nhs.net Or Rachael Hodgetts on Rachael.Hodgetts@nhs.net or call

8 Quiz and auction night to raise funds for sponsored cycle ride to support younger people living with dementia Hello everyone, It's me Nigel, hope your well, Not sure if you know but two years ago I was diagnosed with a rare form of dementia called vascular young onset dementia. Which basically means I am very young to have it. This has come about because I have suffered several strokes. In am holding a charity quiz night at Barnards Green Cricket Club on Sunday 24th September at around 6pm to help raise money for my 3 sons who are cycling from Malvern to Croyde (North Devon), my favourite holiday place. They are raising money for a charity that supports me and also together we work with senior doctors and nurses to help aid their understanding of how to care for people with dementia. I would be so grateful if you could make it, for one it would be great to see you and two help us raise some money. I know it's a way off but I thought a bit of notice and you could pencil it into your diary, please tell others and bring friends. It will be 5 a head and the winning team will get a case of wine. Just a bit of fun. Have a drink and do a quiz. I am hoping to get some good football prizes that we can auction off too. Let's hope our local teams such as Birmingham city, Aston villa, West Bromwich and Wolves give generously. I have also contacted Man Utd and the Football Association. If anyone has contacts with Malvern Town, Hereford or Worcester or other local teams please could you ask for anything to auction. I have a justgiving page which is so you can see what the boys are doing. I will be in the support vehicle following them. Thanks a lot and really hope that you can make it. It will be so nice to see as many of you as possible. The boys may open a book to see how many I can remember, or want to remember ha. Love to all Nigel or George (If you can let Jo or Rachael know if you would like to attend we ll get a message to Nigel)