One mans mission to raise awareness of dementia.
Son, Carer, Campaigner.
Are you a carer?
Please watch my short film, which includes families and carers reading from the letters they sent me.
If you would like to share your story or make a persoanl pledge to make a difference please email firstname.lastname@example.org
Monday, 3 April 2017
Living with Dementia - Caring for a loved one - Further support andInformation
There is an increasing range of help available to support day to day life for those affected by dementia, including assistance with speech and language, nutrition, adaptations and equipment and specialist occupational therapy services. Information about the full range of services available to support people with dementia and their carers in your area can be obtained by contacting your local Social Work Department and /or GP practice.
Under the Scottish Government’s Post Diagnostic Support Guarantee, anyone diagnosed with dementia on or after 1 April 2013 is entitled to receive a minimum of a year’s worth of dedicated post-diagnostic support, coordinated by a named link worker. This support is designed to help the individual and their family adjust to the diagnosis, navigate through the services available and plan for future care. You can find out more by contacting your GP or local Community Mental Health Team.
Alzheimer Scotland’s specialist dementia services provide personalised support designed around each individual, including 1:1 support and day services. Their local Dementia Advisors and 24 hour Dementia Helpline are always there for advice and information. Their branches and community activities, from dementia cafés to football memories, are a great way to meet other people and benefit from mutual support.
If the person you care for is admitted to an acute hospital setting, you can ask a member of staff for a ‘Getting to Know Me’ form. This allows you to record personal information about their likes and dislikes, names of family and friends, and what may be worrying them while they are in hospital.
The information, which will be kept at the bedside, helps staff to build a fuller understanding of your loved one’s life story, preferred routines and specific pieces of information which may be helpful during a hospital stay or attending outpatient services such as what helps them to rest or relax.
Charter of Rights for People with Dementia and their Carers:
The Standards of Care for Dementia in Scotland are designed to inform and empower people with dementia and their families and carers on the level and quality of care they should expect from all dementia services and in all care settings. The standards also tell people what they can do if they think the standard of care to which they are entitled is not being met.
Glasgow City Dementia Strategy:
The emerging Health and Social Care Partnership in Glasgow is working alongside Alzheimer Scotland to develop a Glasgow City Dementia Strategy which will be published early 2016. This strategy will provide a framework to support high quality dementia services and help create a Dementia Friendly Glasgow.
The Self-directed Support Act aims to provide local authorities with a power to support carers in their caring role. To find out more information, please visit www.selfdirectedsupportscotland.org.uk
Scottish Public Services Ombudsman:
Considers complaints about organisations providing public services in Scotland, normally only once you have been through the complaint procedure of the organisation involved.4 Melville Street, Edinburgh, EH3 7NS.
Equal Partners in Care (EPiC) is a joint project between NHS Education for Scotland (NES) and the Scottish Social Services Council (SSSC).
They aim to support workers from health, social services and other sectors to work in partnership with carers and young carers, and to achieve better outcomes for all involved in the caring relationship.
MindMate is the ultimate platform for people with dementia, their families and caregivers. The award-winning MindMate App engages people with Alzheimer’s and helps them stay independent. Together with MindMate+ this gives caregivers and family members peace of mind by providing remote access and useful tools to offer a helping hand regardless of their location.
With great support of the ALLIANCE, the Dementia Carer Voices team and especially Thomas Whitelaw as community advisor, the MindMate Team follows the mission to not only raise awareness but to make a real difference for people affected by dementia.
Healthcare Improvement Scotlandis the national healthcare improvement organisation for Scotland and part of NHS Scotland. They work with people who use supports and services, carers, communities, staff who provide care in hospitals, GP practices, clinics, NHS boards and the public.
They promote 5 key “Must Do with Me” areas which aims to ensure that people are at the heart of their health care and support plans.
Health Innovation Network:
The Health Innovation Network have put together a Dementia Peer Resource Pack which brings together evidence based resources to help community groups and funders set up and run peer support groups, as well as guidance on how to make older people groups more dementia friendly. It includes films, case studies, policy and research related to the benefits of peer support, as well as resources on funding, staff training and evaluation of groups. It was developed in England and whilst the policy landscape is different, it is a valuable learning resource.
NHS Health Scotland – dementia publications web links:
Coping with dementia: A practical guide for carers
Date: 10 April 2014
Description: This book contains information and advice for people who care for someone in the middle to late stages of dementia (moderate to severe dementia). It aims to: – help you feel less alone – give you practical advice on coping – help you to find caring more rewarding and less stressful – show you where to go for help and for more information.
Description: This booklet is for you if you’re a young person, and someone you’re close to has dementia. Maybe it’s your mother or father, one of your grandparents, another relative or a family friend. This booklet will help you to understand what dementia is, and what’s happening to the person with dementia, cope with the effect the person’s illness has on you, and find help and support if you need it.
Living Well With Dementia (previously Facing dementia)
Date: 14 April 2014
Description: A booklet for those who are either worried about dementia or who have been diagnosed. It provides reassurance and suggests practical steps to improve or maintain dignity and the quality of life as far as possible.
Younger people with dementia: living well with your diagnosis
Produced by NHS Health Scotland in partnership with Alzheimer Scotland and the Scottish Dementia Working Group, ‘Younger people with dementia: living well with your diagnosis’ DVD is designed for the person who has just been diagnosed with younger onset dementia (dementia under the age of 65) and for the family and friends of the person diagnosed.
The DVD provides insights and information from younger people with dementia and their family carers about their journey to diagnosis and which resources are available to support living well with dementia. The DVD aims to provide information on:
helping people in the early stages of diagnosis to understand more about their illness
sharing experiences around how to ‘live well’ after a diagnosis of dementia, as well as offering practical advice on coping with its effects
suggesting where people with younger onset dementia, their families and carers can go for further support.
Younger people with dementia: living well with your diagnosis DVD