There is a vast amount of information to be found on neurodegenerative diseases in all its forms on the information superhighway that is the worldwide web. Best known and very useful are:
- The NHS
- The Alzheimer’s Society
- Dementia UK
NHS help in general for dementia patients includes the services GPs and hospitals plus other services such as: physiotherapy; audiology; ophthalmology, dentistry and speech and language therapy.
The NHS also offers “continuing healthcare”. This is for people deemed to have complex health and care needs.The cost of all your care at home or in a care home plus local council social services is covered, funded through the local integrated care board (ICB).Qualifying for this is not straightforward, though, and a diagnosis of dementia is not enough in itself. To find out if you qualify you need to undergo an assessment by a panel of healthcare professionals, which you have to request by contacting the continuing healthcare co-ordinator at your local ICB.
NHS-funded nursing care applies to people who are in a nursing home. If you are eligible, the NHS will pay for your nursing care, but again this depends on an assessment by your local ICB.
The Alzheimer’s Society is a countrywide organisation that is the biggest and best known campaigning charity. It funds research as well as providing services for people with dementia. The charity claims unequalled knowledge and experience built over 40 years. Although the main thrust of the charity is to campaign for better support overall for dementia families, it continues to provide services directly or through partnerships with the NHS.
Services include a telephone support line offering personalised information and advice (0333 150 3456); an online community forum that is open day and night to offer support through shared experience and a directory of activity and support groups around the country. All these can be viewed on their website. The society also provides a range of print publications and factsheets.
Dementia UK is the national charity behind the Admiral nurse scheme which funds the training and deployment of these dementia specialist nurses through the NHS. Dementia UK also provides an online Admiral nurse support service including a free dementia helpline(0800 888 6678) A virtual clinic offering online face-to-face (video) appointments or telephone appointments with an Admiral nurse are also available to book through the website. The virtual clinic is available 10am to 5pm, Monday to Friday: appointments are for 45 minutes and are free of charge.
Herbert Protocol is a national scheme which can hold useful information on vulnerable people, to help if they go missing. It records a person’s vital details and a photograph to make searching quicker and easier by the police.
If you are caring for someone at risk of going missing, you can access the form on the Devon and Cornwall Police website, devon-cornwall.police.uk/advice/advice-and-information/missing-person/missing-persons/vulnerable-people-at-risk-of-going-missing/dementia-missing-risk-herbert-protocol/
Sunflower lanyards are a way for organisations to spot if someone has a non-visible disability such as dementia, which you may find helpful. Wristbands, badges and help cards are also available.
To read more about the scheme you can visit the Hidden Disabilities website where lanyards can be purchased for £8.10 (including VAT and postage): hdsunflower.com/uk/
Alzheimer’s UK has more information about the scheme on its website: alzheimers.org.uk/blog/hidden-disabilities-dementia-sunflower-lanyard
More national support
There is a vast range information and guidance available on the following websites: