If I had a pound for each time a carer said to me "if only I knew then what I know now", I'd be a rich woman. But sadly, this has often been after many difficult years of struggling alone. Their advice to other people worried about themselves or their loved ones would undoubtedly be: get help early.
Although public awareness of dementia is increasing, knowing who to turn to for help can often be difficult. It isn't easy to sit down with the person you're worried about and have that conversation, especially when often, your concerns are dismissed. But – as I've learnt in my role as a Dementia Advisor in Kingston - brushing things under the carpet can only continue for so long.
It's my job is to support people with dementia and the people caring for them. Consultants, GPs, social workers and pharmacists can all refer into the Dementia Adviser service, and people can also self-refer. My focus is on supporting people with dementia from the point of diagnosis onwards, but we also have Dementia Support Workers, who provide support to carers and family members. This may be through one-to-one home visits, or by running peer support groups where carers get together on a regular basis to talk about their experiences.
Everybody has questions: ‘when is the right time to take over when I see my husband struggling?’ or ‘what should I say when mum is asking to go home?’ or ‘why doesn't Dad want to do anything any more - he always used to be so active?’ – and of course there's no one right answer. But talking these day-to-day challenges through with people who are in the same boat, swapping advice and anecdotes, can be a real lifeline.
Carers are given a chance to speak openly about how dementia is affecting them. People share tips on how they cope or talk about how they are struggling, and friendships are formed. We offer advice on coping strategies and help people to understand why their loved ones may be behaving in certain ways. Understanding the illness is hugely important in accepting the changes that are happening and helping carers to cope.
When Kim's father, Derek, was diagnosed with dementia, knowing there was information out there - to access when she felt ready - was comforting: “My son Josh was quite young, and I worried how I'd cope with Dad's illness and looking after him, as well as how mum would cope… knowing where you can go for information is really important", she said.
Support groups aren't for everybody, though – some are unable to leave the person they care for alone, and some people aren't close to one. Especially for people living in rural areas, a lack of access to support services may prevent them from getting together with others. If you find yourself in this situation, do – please – still contact us. Advisers and support workers can make regular home visits, and in some areas befriending services are available.
Talking Point, our online forum, can also be a vital source of support for people who cannot access other services. As with our support groups, it connects people affected by dementia and provides a wealth of information, advice and emotional support, at any time of the day or night. We also run dementia cafés, which people with dementia and carers attend together, and popular Singing for the Brain groups which can be wonderfully uplifting and tap into long-lost memories. Many carers are amazed when they see the person they care for singing along and remembering words to songs.
People approach Alzheimer's Society for all kinds of reasons. If you do have concerns or need information about any aspect of dementia, even if it is to find out what dementia is, please, please get in touch. The earlier you have access to the right information, the easier it will be to understand dementia and to provide the right support to people.
The Dementia Advisor service is available across England, Wales and Northern Ireland – so if you think you could benefit from what you read here, the best thing to do is contact your local Alzheimer's Society office and find out how we can help you.