what i wish people knew about dementia
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Book review: What I wish people knew about dementia by Wendy Mitchell

4 min read |
Gemma Clay Sweet Pea Care Webinars

Author 21.03.2023

Gemma Clay

The late Wendy Mitchell’s second book 'What I Wish People Knew About Dementia' dispels assumptions about what it is like to live with the disease.

The best selling author, who passed away in February 2024, produced a must read guide for families, helping them navigate life after a dementia diagnosis.

Mitchell uses first hand knowledge and experience to shape her recommendations for carers, friends and family members of someone with dementia.

Here's our full review.

Here’s what we’ll cover in our book review:

  • By taking control of her diagnosis and shaping the way it would inevitably manifest in her life, Mitchell is proof that living with dementia, can still be joyful and you can experience fulfilment. 
  • One of the primary pieces of advice to caregivers reflects the inevitable impact on relationships and how to navigate the dynamic between those giving and those receiving care. 
  • Mitchell conveys that dementia is so much more than about memory, and by solely focusing on that one element many others that impact relatives are missed.
what i wish people knew about dementia (1)

About Wendy Mitchell

Wendy Mitchell was diagnosed with early-onset dementia in 2014 and it soon became clear that the conversation around dementia was limited. 

She saw a lack of commonly held knowledge and insight into the disease and how it impacts people’s lives. 

Which made her diagnosis feel like a terrifying plummet into losing control over her own life. 

Taking control of the situation

But she knew it didn’t have to be this way. 

By taking control of her diagnosis and shaping the way it would inevitably manifest in her life, Mitchell was proof that living with dementia, can still be joyful and you can experience fulfilment. 

This is not to say she sugar coats the challenges of the disease – quite the opposite.

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The Book Review: What I wish people knew about dementia

Through illustrative anecdotes from her life, both before and after the dementia diagnosis, Mitchell writes frankly about the realities of living with dementia. 

It’s through the portrayal of these realities that she hoped to help people to feel prepared when coping with the many facets of the disease. 

As Mitchell recalled of her own experience, the period of time after the diagnosis can be a lonely and anxious time.

Plus, professional intervention is often not available and families are simply left waiting for disaster to strike. 

Empowering words

Yet I want to reassure you, as Mitchell does, that this is a story of empowerment. 

One that, she hoped, would surprise, inspire and inform her readers to ‘help you live the best life you are able to with the disease or support someone you know far better.’

Worried about your loved one?

Early signs of dementia free guide

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What are the themes in 'What I wish people knew about dementia?'

Firstly, this is a book that offers advice, ostensibly to carers of those with dementia, a figure she quotes at 670,000. 

Navigating relationships

One of the primary pieces of advice to caregivers reflects the inevitable impact on relationships and how to navigate the dynamic between those giving and those receiving care. 

In the chapter on relationships, Mitchell references a study by Dr Sahdia Parveen called the Caregiving HOPE study, combining the findings with her own experiences. 

She notes that ‘there is a lot to be said for that old adage that tells us to apply our own oxygen mask before helping others.’ 

She writes that ‘You are no use as a carer to anybody if your own energy supplies are run down.’ While this may seem like an obvious point, it is one of the most important for any caregiver to remember. 

Why do carers need respite care? 

Helping carers

Secondly, much of the wisdom Mitchell imparts is dually applicable to carers and to those faced with a dementia diagnosis themselves. 

Living with dementia herself, as well as collecting the experiences of others, Mitchell offers valuable insight into the mind of someone whose brain is actively changing. 

She uses this first hand knowledge and experience to shape her recommendations for carers, friends and family members of someone with dementia.

Helping them to care for their loved ones in a way that empowers them rather than exacerbates the sense of disability.

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Dementia friendly environments 

In the chapter on ‘environment’, Mitchell discusses the impact and importance of dementia-friendly spaces that serve the needs of the older community, including those with dementia. 

She writes how some essential community services are designed or decorated in a way that is a minefield of confusion that can be profoundly disabling. 

She gives a voice to disturbing hallucinations and sensations that are not given precedent when we think of dementia as a memory disease. 

This is an invaluable bit of insight into a relatively unspoken aspect of the disease. 

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Why did Wendy Mitchell write the book?

This is the kind of information we as a society need to understand in order to create an empathetic response to dementia in the community, as well as our own social or family circles.

Her primary motivation was to share those nuggets of information and insight that the author wishes people knew about this disease. 

Mitchell proudly states that she has ‘been vocal at the lack of aftercare for those of us with dementia and about what a difference it would make to our lives,’ and for good reason. 

Inspiring others

Plus, she is proof that living well with a progressive disease is possible. 

While a dementia diagnosis will never be welcome news, it doesn’t mean waving goodbye to independence, costly care packages or a complete existential overhaul. 

If you’re looking for compassionate yet no nonsense guidance on living well with dementia, look no further. Wendy Mitchell is undoubtedly the definitive voice for our times.

Worried about your loved one?

Early signs of dementia free guide

Further info on dementia

If you want to hear other first hand accounts then why not try reading more books on dementia. 

They’re a fantastic way to hear from experts as well as learn practical coping strategies.

If you found this guide useful then you might like to read our guide on dementia care.

And there’s more here on what benefits you can claim if you have dementia.

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Interested in home care?

If you or a loved one need a little bit of extra help around the house then home care might be right for you.

It can be arranged flexibly and personalised to your specific needs.

All you need to do to use our care search service is to enter your care details and we’ll do the rest.

 

Gemma Clay Sweet Pea Care Webinars

Author 21.03.2023

Gemma Clay

Gemma is the Founder and CEO of Sweet Pea Care and has been advising families and care companies for the last decade through Arc Seven Communications.