Monday 20 May 2019

We are family – A Dementia Action Week blog

With over 200 blogs on D4Dementia now, some of them approaching 7 years old this month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, for Dementia Action Week (DAW2019) I want to highlight a previous DAW blog and tell you Hazel and Bill’s* story.

For DAW2017, I wrote a blog entitled ‘Five things I wish I’d known before my dad’s dementia’In that blog I said:
"It may seem remarkably obvious, but dementia changes lives. It REALLY changes lives. The problem with telling people that is, until you've experienced it, you don't realise just how much."
Those words are as true today as they were two years ago, and for DAW2019 I want to share a particularly striking example of how dementia has changed one couple’s life, leaving them on the periphery of society.

A few weeks ago I had a chance encounter with a lady, Hazel, who had been diagnosed with dementia just over a year ago, and her husband Bill, in a cafe. We got chatting as they watched our 3-year-old playing and we ended up having a long conversation. 

Hazel and Bill told me they’d never had any children and were only children themselves, with no extended family. They said they went to the cafe once a month because it was somewhere they could ‘watch the world go by’. They have their groceries delivered, because supermarkets are too noisy and chaotic, and trips to their GP practice are daunting as it’s so big and impersonal with its electronic check-in system. 

Hazel and Bill live in a rural location, and said their main company comes from the birds who visit their garden and a neighbouring cat who also takes an interest in the birds! They said they’d never met the owners of the cat - new people had moved into their neighbourhood a few months ago but ‘kept themselves to themselves’.

Reading Hazel and Bill's story, it would be tempting to think that their circumstances are unique. After all, most people have some family and go out more than once a month. Except I don't believe Hazel and Bill's circumstances are unique. If you've never discovered Ageing Well Without Children I urge you to have a look. Their stats tell us that the number of people over 65 without adult children is currently in excess of 1.2 million, and is set to rise to 2 million by 2030. Moreover, in these days where you can order online and get just about every conceivable item delivered to your home, you don't need to go out. I certainly avoid the shops with our toddler!

For people like Hazel and Bill, being so isolated can have some undesirable consequences. It’s known that social interaction is a key component in reducing dementia risk, and if a person has already developed dementia, social interaction can help to improve their quality of life and wellbeing.

Then of course there is the impact on Hazel and Bill’s relationship. As Hazel built a lego castle with our daughter, Bill said to me quietly that he wonders how he will cope as Hazel’s dementia progresses. He says he’s keeping their heads above water for now, but feels lonely and worries about what the future might hold. 

Hazel and Bill left the cafe when more customers arrived and it became too noisy for Hazel. Bill said it was best to embark upon the drive home before Hazel became too restless, as she struggles with the movement in the car and it’s getting harder and harder to persuade Hazel to even get into the car now.

They both said that watching our daughter had been a joy, and they hoped to see us again. I made some suggestions of support mechanisms that Hazel and Bill might want to access, including the Admiral Nurse Dementia Helpline, the Dementia Engagement and Empowerment Project (DEEP), Dementia Carers Count and Together in Dementia Everyday (TIDE), but I’m not sure they will ever make those connections. Perhaps most tellingly of all though, when I asked Hazel and Bill if they had ever attended any local support groups, or accessed any dementia friendly services, Hazel replied and said: “We used to go out more, but we don’t fit in now I’ve got this” (and pointed to her head).

The sadness I felt at that last comment has stayed with me, driving my desire to improve the lives of people living with dementia. I hope it might have the same impact upon you too.

So, how do we reach out to people like Hazel and Bill? They rarely have contact with any services, so opportunities are few and far between. That busy GP surgery is one contact point, and their Memory Clinic appointment(s) would have been another. Then there is the cafe - the one place Hazel and Bill go to of their own free will. I asked the waitress who came to clear our table if it was a particular goal of theirs to be welcoming to people with dementia. She said no, adding with a smile: “Our customers are our family.”

As individuals we can all do our bit to make people with dementia feel included and welcome, no matter who we are or what our service is. We don’t have to do it in a formal way - every way helps! And I don’t believe that it requires any particularly special skills - offering a safe space, a friendly smile and a simple enquiry about how someone is, or asking if you can help.

We can all be people of action this and every week of the year, adopting that motto from the cafĂ© – ‘We are family’. 

(*Names changed to protect identity)
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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D4Dementia 7th Birthday

On 20 May 2012, I began D4Dementia with this simple introductory post: Welcome to D for Dementia.

Since then the blog has been read by thousands of people around the world, and I’ve had countless comments, requests for help and stories shared via email or social media. For every person who has ever read my blog, or taken the trouble to share it or comment on it, thank you. I appreciate all of your amazing support.

In preparing for D4Dementia’s 7th birthday, it occurred to me that I'd never actually asked my readers what you think of the blog in an organized, analytical way. So I created and published a 5-question survey on 20 April 2019 to gather that feedback. 

Thank you to everyone who completed the survey. I’ve loved reading your responses and want to share some of the information I’ve gathered.

Firstly, I asked how often you read my blog – almost every respondent said monthly, which is fantastic considering I publish a new blog monthly. Then I asked if you had a favourite post on D4Dementia. Most respondents didn’t, but those who added an optional comment pointed to posts including the following:

Then I asked for your comments on D4Dementia. These are a selection:

Question 4 asked what is most important to you in blog content. You can see the answers below, with 'Providing practical solutions' and 'Drawing on personal experiences' as the most popular choices.

Finally, my last question asked about topics you’d like me to cover in future blogs. Some of the suggestions that were made have already been put into my workplan, but to address two comments that I probably won’t be writing stand-alone blogs about:

"I'd like to know more about your work and impact in the sector."

Please see my website for more information.

"More about co-housing with students/young people."

I would suggest reading about the work of Homeshare and Shared Lives Plus.

Huge thanks once again to everyone who reads my blog and everyone who contributed to the survey. I hope you continue to enjoy D4Dementia, and please do keep in touch with your comments, queries or questions.

Next up, my Dementia Action Week blog: 'We are family'.

Beth x

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook