A diagnosis of dementia can feel like the end of life as you know it. But it needn’t.
Although the news is just as shocking for family and friends as it is for the person diagnosed, it’s important for everyone to remember that it is possible to live, and LIVE WELL with dementia for many years.
The key to coming to terms with the range of emotions you’ll be experiencing is to arm yourself with as much information as possible. As Nina Balackova – an inspirational Czech lady who spoke about her own experiences of dementia at the Alzheimer Europe Conference in 2013 – said “You can’t choose what you feel, but you can choose what you do with it.”
The amount of information and support available is growing all the time so here are our suggestions for some helpful places to find reliable and easy to digest information and advice. The list is by no means exhaustive, but it will hopefully give you some valuable starting points.
The Alzheimer's Society www.alzheimers.org.uk is an obvious place to begin, whether you have been diagnosed with Alzheimer’s or one of the many other forms of dementia.
Particularly helpful sections on their website are:
- Factsheets which provide detailed information on an enormous range of subjects and lists of where to gain further information and support.
- Online Forum which gives you access to a safe online community where you can ask questions, share your experiences with others in a similar position, and receive advice and support 24 hours a day.
- Local Information about services and support groups in your area.
- E-Newsletters which you can subscribe to for free to keep you updated with the latest news and information.
- Alzheimer’s Society YouTube channel where you can watch video clips of real people sharing their personal experiences.
“DEMENTIA : The One Stop Guide” is a recently published book by Professor June Andrews, with the aim of providing practical advice for families, professionals and people living with dementia and Alzheimer’s disease. (Published by Profile Books, February 2015)
Professor Andrews is Director of the Dementia Services Development Centre (DSDC) at the University of Stirling where she has gained a well-deserved international reputation for her work to improve the lives of those affected by dementia.
Her sensible, no nonsense and easy to relate to approach in this book makes it a truly valuable read. It is well laid out so you can dip in and out of the chapters you find most relevant, and she answers the most pressing questions you’re likely to have without bogging you down in jargon or unnecessary detail.
Chapters include: How to keep dementia at bay, Managing care at home, Disturbing behaviours, Your dementia-friendly home, What you should expect from the social care system, and many more.
I must point out that we have no commercial interest in this publication, but recommend it simply because of the quality, reliability and up to date information it provides. It’s a truly helpful read in our opinion and is worth every penny. It can be purchased from Amazon by clicking on the image below or DSDC’s own online bookshop at www.dementiashop.co.uk
NHS Choices – Care and support guide www.nhs.uk/conditions/social-care-and-support-guide/Pages/what-is-social-care.aspxThis is a valuable resource providing information for carers on a whole range of issues including how to fund care, benefits that may be available to you, how to get a carer’s assessment, how to access breaks and respite care etc.
Your local GP surgery will be able to advise you on services and support groups available in your locality. Services do vary from area to area but help from a range of professionals may be available, such as Occupational therapy, specialist dementia nurses (Admiral nursing teams), or Social Care teams, and your GP will be able to help make the necessary referrals.
We hope these suggestions prove a useful starting point for you. As one contributor to the online forum at the Alzheimer’s Society put it, “this is a road that nobody chooses to go down, but the more educated you are on what’s happening, the more accepting you are of what’s going on”. Try not to let anxiety about what may happen in the future dominate your thoughts. Take things one step at a time and keep your focus on managing the present.
In future posts we’ll endeavour to focus in on particular aspects of care that may prove helpful to you.
As always, if there is something specific you want to know please click here to email us with your question or post a comment below and we'll be delighted to help you.
This article was oringinally published on Dementia Care Stroud