Man with placard

People living with dementia tell us the actions that make a difference

What actions could improve the everyday lives of people living with dementia? We asked people with a dementia diagnosis to find out.

This year we made the decision to change the name of Dementia Awareness Week to Dementia Action Week. While we will continue to raise awareness and offer support, this week is about going further to create the changes in communities that people with dementia want to see. But what are those changes? We asked people with dementia what small actions people can take to improve their everyday lives, and this is what they told us.

What actions could improve the everyday lives of people living with dementia?

Ask me if I need help

"Going shopping can be difficult and confusing – finding your way around, remembering what you have come to buy etc. If I seem confused, ask me if I need help. I would feel somebody cared about me"

Understand I'm still me

"to understand that I’m still the person I always was, but now I have memory and cognitive problems. My diagnosis of dementia doesn’t and shouldn’t define me. I am still me."

Keep in touch

"friends who still keep in touch. Facebook messaging as I live in a remote rural area, and taking it in their stride that my memory is all to pot!"

Allow me to keep control

"It would be helpful if people took the time to explain things more fully and then make sure I have understood, rather than assuming that I've understood. If I understand fully then I can make an informed decision. This allows me to keep control of my life."

Talk to me about dementia

"I want to talk about dementia, it helps me to talk about it. By talking about it with my neighbours I get help. They take me shopping once a week and that really helps."

Include me

"Give me information in small doses – not too much at once. Inclusion so I don’t feel lonely. There's nothing worse than feeling different from everyone else"

If in doubt, 'be more cat'

"If I say I have dementia, the way I know if people have understood is if they say they will slow right down and stay stationary and then actually do it. My cat has really cracked this! She sits silently when I talk, she never finishes my sentence, she listens and doesn’t interrupt, she never contradicts or corrects! She stays still – she doesn’t talk to me when she is walking in and out of the room. Please be like my cat when you have a conversation with me."

Next steps

  • Choose and share an action to take this Dementia Action Week
  • Join the conversation by sharing your action with the hashtag #DAW2018

6 comments

Add your own

As an elderly and partially disabled carer for my wife who lived several years with Alzheimers but has now sadly passed away, my experience was that following diagnosis my wife almost wore it as a badge of honour-she was very open about it, told all her friends and colleagues about it and as a result of that attitude everybody treated her perfectly normally, making allowances for anything unusual. That allowed her to continue to make the most of life and to continue to enjoy doing the things she loved. Of course as the condition deteriorated things became rather different, but my advice to anyone with a recent diagnosis is absolutely to be totally open, even joke about it, and when among strangers, as when shopping for example, where a badge where it can be seen, talk to the check-out staff, and you will find that among the general population people generally will respond positively if they see you in difficulty and are aware that you have a problem and don't try to hide it. Try it, and you won't feel isolated!

There is a real problem with some banks not understanding Lasting Power of Attorneys. I have had a bank refuse to accept an LPA, because although it was the standard format and approved by the Office of the Public Guardian it didn't meet its own internal guidelines! I've been asked to send my passport, driving licence plus three letters of identity, and had the documents returned in an unsealed envelope (and not eg registered post). Appalling security and data protection breach! I've supplied letters from DWP with both my name and my relative's name as additional evidence and it's been rejected "as the way the DWP displays my name does not meet their internal guidelines, could I ask the DWP to change their system"! Security is vital. But this all takes time (6 months in one case) and costs money. Often you need to act fast. Many bank systems are not fit for purpose: work with the OPG, DWP etc and get your systems to align please! It's not the carers job to be piggy in the middle.

Why is your website automatically loading a hovercard? This is awful. A total breach of my security. Please delete my comment if it's going to do this.

Hi there LH, thanks for getting in touch.

We think you might be referring to a temporary pop-up that we ran. We assure you this was not spam - we were looking for people to take part in user research to improve the information we offer people affected by dementia.

Thanks

^ Amanda

my wife has lost the ability to converse is there anything I can do

Hi Derek, I’m sorry to hear that your wife has lost the ability to converse, this may happen in the later stages of dementia.

It can be helpful to remember there are different ways of communicating other than speech. Non-verbal communication is very important for people with dementia, and as their condition progresses it will become one of the main ways the person communicates. You could learn to recognise what a person is communicating through their body language and support them to remain engaged and contribute to their quality of life. A person with dementia will be able to read your body language. Sudden movements or a tense facial expression may cause upset or distress, and can make communication more difficult. Try to make sure that your body language and facial expression match what you are saying, and avoid standing too close to someone when communicating as it can feel intimidating. Instead, respect the person’s personal space and drop to or below their eye level. This will help the person to feel more in control of the situation.

You can also use physical contact to communicate your interest and to provide reassurance – don’t underestimate the reassurance you can give by holding the person’s hand or putting your arm around them, if it feels appropriate.

There may eventually come a time when the person can hardly communicate at all using language. This can be distressing for them and those supporting them, but there are ways to maintain communication and support the person to express themselves. Dementia can also affect a person’s cognitive abilities. A person with dementia may have slower speed of thought, or not be able to understand complex ideas. This can also affect their ability to communicate.

You may find the information in our fact sheet on Communication helpful, and I have provided the link.

https://bit.ly/2z1hHHS (Communicating)

Regards
Helpline advisor

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