Navigating the dementia journey
According to the BBC, around 1 million people in the UK are on their dementia journey, and the number is set to increase as the population ages. Understanding of dementia is much more wide spread these days, and the stigma is reducing, but there is still work to do. Dementia Action week takes place on 18-24 May this year. Dementia Action Week is a national campaign to raise awareness of dementia and highlight support and activities in your local area.
What’s on in your local area?
Brighton & Hove Council have brought together lots of fabulous dementia-friendly events and activities to get involved in. You can also call the Ageing Well Team on 0808 175 3234 to find out more or ask for a programme to be sent to you. Age UK will signpost you to activities in your local area.
Diagnosis
The Alzheimers Society list these as the 10 early signs and symptoms of dementia:
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks
- Confusion with time or place
- Difficulty understanding visual images or spacial awareness
- Problems with words when speaking or writing
- Misplacing things and not being able to retrace your steps
- Decreased or poor judgement
- Withdrawal from work or social activities
- Changes in mood or personality
If you are concerned that you might have dementia the first step is to see your GP. They will do preliminary tests and may then refer you for a memory assessment. The memory assessment usually involves a more in depth memory test, and sometimes a brain scan. If you are diagnosed with dementia you may be offered medication to slow down the progress of the disease. You will also be given information about local support and activities.
Medication
Currently available medications aim to reduce the progression of dementia, not offer a cure. Recent research published by Cochrane suggests current medications prescribed for dementia showed “absolute effects of anti-amyloid drugs on cognitive decline and dementia severity were absent or trivial”. However many experts have called these results into question, saying the research lumped together data on older drugs with newer, more effective drugs. The Alzheimers Society state that 1 in 10 patients see a clear improvement from treatment. 8 in 10 patients notice no major change but benefit slightly. NICE are currently reviewing other potential new treatments. The Alzheimers Society has some useful information on alternative treatments for dementia.
Getting help
We are amazed at how well, with the right support, people living with dementia can stay independent in the own homes. So getting some help at home is probably the best place to start. Home & Company support many people with dementia. We’re helping with shopping and daily meal preparation, household chores, home and medical admin, prompting medication, getting out & about, and more.
Having one to one companionship visits can make such a difference when group dynamics might have become overwhelming. We can tap into earlier memories and talk about the old days. We can look at photos or recite old poems and songs, and build up a picture of who they are. We’ve made lovely life story books with some clients.
Home & Company can also provide live-in care when someone’s dementia means they are struggling to be, or feel safe alone at home.
We also have a team of fabulous associates who are able to provide other services in the home. This includes hairdressing, beauty, foot care, dentistry etc. All these things are so important to our wellbeing, but become hard to access if dementia means leaving the home is no longer possible.
Other support
Sussexdementiavoices.org is a website with information about what dementia support is available in Sussex. Howie Blanks, who founded the website, says there are many support services but they can be difficult to find. You can use the map function to find support in your area.
Have you heard of Tapestry Day Club? It’s a charity that offers people with early-stage dementia an opportunity to enjoy lunch and activities in a small group setting, hosted in the welcoming homes of trained hosts on a regular weekly basis. There are currently clubs in Burgess Hill and Haywards Heath. We’d love them to have one in Brighton & Hove too! If you are interested in knowing more do get in touch with Tapestry Club on 01403 610345 or email support@tapestrydayclub.co.uk.
The Ageing Well Team in Brighton have lots of information on activities and events for people living with dementia and their carers. You can call them on 0808 175 3234 to find out more.
Benefits
If you are living with dementia and need assistance with daily activities, and are of pensionable age, do apply for Attendance Allowance. This is a non-means tested benefit. Attendance Allowance is about having the means to get additional support to help you stay independent for longer. Contact the Attendance Allowance helpline on 0800 731 0122 for more information or to be sent the application form. Or download the form at Attendance Allowance Form. Local Age UK branches can often help or advise on completing the form. Bear in mind that you need to be very detailed about the help you need and the things you are finding difficult.
Did you know that people living with dementia are eligible for a discount on their Council Tax. It varies but will be between 25-100% depending on who else you are living with and whether they are also eligible. Contact your local council Adult Access Point to check.
If you are worried about dementia and want to speak to someone about what to do please don’t hesitate to get in touch.