Karenza's story: 'Alzheimer’s Society information helped me navigate my Dad’s dementia'

Find out how Karenza used our website and publications to better understand dementia following her father's diagnosis.

Last year, it was suspected that Karenza's father had an infection. When doctors started mentioning dementia, Karenza and her family began to research it. Once Karenza's dad was diagnosed with advanced dementia with Lewy bodies, she found advice and guidance from the Alzheimer's Society website.

Now, Karenza and her work colleagues will donate money raised over the past year to Alzheimer's Society. 

Read Karenza's story below and find out how our information can help you navigate a diagnosis of dementia. 

An Alzheimer's Society information stand

Karenza (right) with Alzheimer’s Society Community Fundraiser, Sian Neville (left).

Understanding Dad's diagnosis

I was already familiar with Alzheimer’s disease. My gran was diagnosed with it in her nineties.

My sister and her family, who live close to me, have a neighbour with Alzheimer’s.

I hadn’t heard of dementia with Lewy bodies before Dad being admitted to hospital last November.

When it started to become apparent that Dad didn’t have an infection (as was first suspected), doctors started mentioning dementia.

Seeking helpful information on dementia

My family and I began researching the various types of dementia.

I only researched dementia with Lewy bodies in detail after the consultant psychiatrist diagnosed Dad.

From a general search online, I came across a number of good resources - one being the Alzheimer's Society website.

I had heard of the Society before, but hadn’t used the information facilities.

Feeling overwhelmed: where do I start?

I wanted to understand all that I needed to know at the outset.

Topics included Lasting power of attorneys, lack of capacity for health decisions, finance and funding, adult social services and more.

I found it all overwhelming and a lot to take in, in a very short space of time.

Hospitals definitely aren’t the right place for people with dementia, but it’s hard to navigate getting them out. For me, the hospital and social services were quite confrontational.

From my experience, they were hard to deal with and sometimes combative.

Whereas, the advice obtained from the Alzheimer's Society and elsewhere was much more constructive and positive.

Gaining insight from Alzheimer's Society

The Alzheimer’s Society website provided comprehensive and easy-to-use guidance on how to navigate through the whole the process.

It gave advice on the range of symptoms associated with dementia with Lewy bodies and how to best to manage them.

I found the information regarding hospital discharge particularly useful. It was helpful to know what care and benefits were available as well.

Our helpline advisers are here for you.

But even using Alzheimer's Society resources, I had to go to friends that had particular expertise in loss of capacity and mental health issues.

Fundraising at work for Alzheimer's Society

This is a charity that is very close to my heart.

£800 was collected from my colleagues at Magna Housing across Dorset and Somerset.

At the end of each month, staff paid £1 to wear casual clothes to the office. The money is saved over the year and donated to the charity that gets the most votes from staff nominations. This year, Alzheimer's Society will receive our donation.

Sian Neville, Alzheimer’s Society Community Fundraiser for Dorset and Somerset, said:

It’s wonderful that staff at Magna Housing chose to support Alzheimer’s Society through their dress-down collections.'

'I’d like to thank their staff for their support and generosity. It goes to show how such a simple fundraising idea can be really effective. We’d love other businesses and organisations to give this a go. Dementia devastates lives, but dementia won’t win.

'Until the day we find a cure we will be here for anyone affected by dementia, wherever they are, whatever they’re going through. We need more people like Magna Housing to join us now and unite against dementia.'

Find practical and emotional support near you

There are dementia services and support groups in your area. Find out what's available where you are.

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My mom have dementia for 12 years.it was hard on me and my whole family to understand the disease of dementia. I pray that I will not get it.
In my mother family they has dementia.

As someone who has had Alzheimer's for about six years, I can encourage people who have been recently diagnosed that it isn't the end of the world. Although I sometimes forget things, such as which day of the week it is, I can still remember a lot of other events

Thank you for sharing this, Eileen.

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