Receiving a dementia diagnosis can be overwhelming – whether you have been given the diagnosis yourself, or a loved one has been diagnosed.
This World Alzheimer’s Month we’re focusing on the support you can access after a diagnosis. Our specialist dementia nurses explain what you should do if you or someone close to you have been diagnosed with dementia.
Many families who call our Helpline say they haven’t been given enough information and don’t know where to turn.
Others feel bombarded by too much information, at a time when they are shocked, confused and anxious.
Often, families say they don’t know what to do next or where to find the help they need.
I have been diagnosed with dementia and I haven’t heard from anyone for months. I don’t know what to do now. I was given a load of papers by the Memory Service and told there was nothing else they could do to help, and now I feel isolated and lost.
The guide contains information on managing practical, financial, legal, medical and personal issues. There is also a simple checklist of what questions to ask, and links to further information that you may need.
“I’ve been diagnosed with dementia – what questions should I ask?”
“Who will be my main point of contact?” This could be the GP, the Memory Service, a Social Worker or another professional
“Will I have follow-up appointments after the diagnosis?”
“If so, who will I see, how often, and who will arrange the appointments?”
“Who will be responsible for coordinating my care and support?”
“Will I be prescribed medication? If yes, how often will this be reviewed?”
“Can a family member or friend come to appointments with me?”
Our specialist dementia nurses have shared the following tips if you have just been diagnosed with dementia.
Decide who you want to tell. You may want to keep the news of your diagnosis to yourself while you process it. But once you feel ready, it’s a good idea to tell your family and friends. They can support you to maintain your independence and plan ahead to help you make the most of life, now and in the future
Think about what’s important to you. There may be a holiday you’ve always wanted to go on, or a hobby you’re keen to try – this could be your opportunity to go for it
Our nurses have also shared this advice for family and friends of someone who has received a dementia diagnosis.
Consider what support you may need yourself. For example, you may be experiencing feelings of shock, anxiety and loss, and need to talk to someone about this
Even if you don’t feel like you need help now, think about who might be able to support you in the future
Get organised: keep a list of information including details of the person’s NHS number, their health and social care professionals, local pharmacies, out of hours services, medications and routines
Try to continue with activities that you and the person with dementia enjoy doing together that will help you stay connected
Set some goals. Think about things you will do now, in the next few months and in a year – this may help you feel less overwhelmed
Find out what support you can access as a carer. Your GP or local council can tell you about carers’ services in your area – these can provide professional support and opportunities to meet other people in a similar situation
“How can Dementia UK support me and my family after a dementia diagnosis?”
Our Helpline nurses can offer a listening ear, signpost you to local support services, and share practical and emotional advice on living with dementia
Here’s what some families have told us about the help they’ve received from our Admiral Nurses.
Before I phoned the Helpline, we as a family had been totally lost and unable to agree on how best to help my grandad. Having expert help and guidance from a specialist dementia nurse felt like an absolute lifeline.
I didn’t know who to turn to for advice when Mum was diagnosed and was so relieved when I came across the Admiral Nurse Helpline. The support went beyond anything I had found online myself – it was so tailored to our personal situation.
I called the Admiral Nurse Dementia Helpline in 2019 when my wife’s hallucinations were getting really bad. The nurse gave me some great practical advice to help me care for Jayne. I am so grateful for the support I received – without it, I wouldn’t have known what to do.
I remember finding the number for the Admiral Nurse Dementia Helpline from some flyers I was sent… but it took a long time for me to call. I thought doing so would make me feel inadequate. In reality, I wish I had phoned sooner.
To speak to an Admiral Nurse on Dementia UK’s free national Helpline, please call 0800 888 6678 (Monday to Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email email@example.com.
If you are concerned about your own memory, or you are worried about changes you have noticed with the memory, personality or behaviour of someone close to you, it is important to consult a GP as soon as possible
A simple checklist of what to ask, what to do and who to approach – so the important next steps are clearly outlined in one place, with links to more detailed information to consider later, when it’s needed