Dear family/carers,
It is important you know what dementia is and what to expect. These booklets and leaflets are designed to help you.
“If you care for a person with a learning disability, you know the most appropriate ways to support them. When a person with a learning disability develops dementia, they will have new needs that have to be met.
Just as every person with a learning disability is different, so is every person with dementia. With the right care and support, it’s possible for you and the person you care for to live well with dementia.”
The Alzheimer’s Society
Use this pack alongside this resource: The workbook ‘Keeping people who have down syndrome well before and during dementia’ can be found here.
And this one: Training pack from Pavillion, which is not free (cost is around £20) but is excellent – click here. A link is provided in the pack for a short two-part film featuring actors with a learning disability with practical examples of some of the issues discussed in this guide.
Information
For you:
A booklet to help you look after yourself (CLDT and Marie Curie)
A leaflet about where to get more help (CLDT)
A leaflet with Top Tips for Carers (CLDT and local care providers)
Booklets to help you support the person you care for:
A booklet about living with dementia when you have a learning disability/Down syndrome (Down Syndrome Scotland)
A booklet about sensory changes (by Agnes Houston MBE)
A booklet about eating and drinking (If you have a care plan from a specialist speech and language therapists, always follow their guidance around eating and drinking) (CLDT)
Two leaflets about how to keep activities and skills going as long as possible (CLDT) & (CLDT)
A booklet about how to make a memory book or box with the person you care for (CLDT)
Booklets about dementia care:
A leaflet about crying out (CLDT)
A leaflet about Sundowning (CLDT)
A leaflet about sleep problems (Alzheimer’s Society)
A booklet about supporting a person who has dementia and depression and dementia (Alzheimer’s Society)
A booklet about delirium (Dementia UK)
A booklet about supporting a person with dementia in a care home (Alzheimer’s Society)
A booklet about health risks to watch for (CLDT)
There are lots of other things you can look at. We recommend these:
- Living with dementia | Alzheimer’s Society (includes information about risks of dehydration, dental care etc)
- Learning disabilities and dementia | Alzheimer’s Society
- What is dementia? | Alzheimer’s Society
- Help and support with dementia care | Alzheimer’s Society
- The Alzheimer’s Society has lots of information about caring for a person who has dementia, and about the stages of dementia.
- This guide is not designed for people with learning disabilities, however it has some information you may find useful: Alzheimer’s Society – The dementia guide July 24
- If you work for a care company, ask your manager about NHSE Elfh training Oliver McGowan. This has lots of free information.
There are lots of other useful things online you can read to understand more about the changes to expect, how to support a person with dementia, and how to support yourself.