4663. Book. What I Wish People Knew About Dementia - Wendy Mitchell

 The Sunday Times Bestseller

1. When spoken language started to fail me, I found that writing my blog was an escape from the road blocks in my mind. Must type daily. If not, letters appear but not in any order. No one knows why  this part of my brain works

2. Blog  Which Me am I Today? 4,000 regular visitors worldwide. Remembering what I did each day. It shares ideas and information. Big headache after speaking engagements, nobody knows. Bullied by social media for being an activist.

3. Dementia has a beginning, middle and end. ie. various stages. Professionals do not see people in the early stages - think they are misdiagnosed. Many misjudge us because of this lack of knowledge.

4.  Dementia is a progressive illness. Referring to it as a death sentence has negative connotations. A sufferer is not positive to describe oneself as dementia person.  

5. One-to-one chats are much better than a group chat. Friends avoid her or talk to her.

4. Tom Kitwoo's dementia-care model is still in use today. Put love at the centre of work that a carer does.

Highlighted the importance of occupation (having a purpose in life), comfort (free from distress and pain), identity (a sense of who we are), inclusion (a feeling of belonging) and attachment ( a feeling of security and safety).

5. Dementia is not a mental illness but a neuological condition. It is a brain disease not a faulty brain chemistry. Disease is associated with mental health. She has young-onset dementia at 50 and finds herself sitting alongside an 80-year-old. Huge stigma about mental health in society.

6. I prefer 'living as well with dementia as your circumstances allow" rather than "living well with dementia" as latter may have negative connotations and mean different interpretations for one person is not the same for another.

7. Most accurate representation will be to see people in all different stages of a dementia diagnosis. But film and media producers do not produce an accurate description of dementia. They allow themselves an artistic licence to otain a certain impact, in providing entertainment, suspense and dramatic effect. Cliches and stereotypes work in a short TV drama where they serve to speak in shorthand  to the viewer. Accurate, balanced and respectful are what she wants.

8. Don't use words like sufferer, demented, senile, burden, victim, plague, epidemic, enemy of humanity, living death. People with the disease don't feel stigmatised by it and don't fear it.

9. Sunflower lanyard communicate we have a hidden disability. Useful on bad days e.g. trains are cancelled, routes are changed at a moment's notice make my brain ready to explode. Complete strangers offer to help me. Some people ssway wearing the lanyard makes others take advantage of me. Your choice to wear them - it makes you feel safer, more able to travel and better equipped to go out into our own community.

10. She now uses Twitter to swap ideas, to boost each other's morale, to provide support or just a laugh. The limit of 140 characters can be understood and read. She tends to focus on the positives of living with dementia.Used Twitter as a helpdesk when she needed guidance on her train journey.

Membership of social media platform help to maintain a sense of identity among people with dementia, provide social connection and reduce feelings of isolation and loneliness following a diagnosis.  

11. Zoom meetings good for us to laughing together - laughter is the best medicine.

12. iPhone and iPad are my door to the world now. Phone set to reminders pinging in my ear. Some daily (remember to eat) , some one-offs like check on an unwell friend. Reminder of things need to do set on the phone.

Simple tracker onto my phone for her daughters.

My London Tube app tells me which station and line I need without staring at the wiggling map with different colours.

Alexa - reminder to take medication,switch on lights upstairs, switch the kettle on,

by giving her a shout. Author lives alone.

13. Pedometer. 28,000 steps walked in one day sometimes. sunny day. Stick to lanes near her home.

14. What can nature teach us? Nature knows about life and death,chaos and order, light and the dark. Waxing and waning of the seasons are necessary. Reminder that there is nothing more natural than change, not something to fear and avoid. 

15. ON WALKING. My daily trundles are my moments of mindfulness; with a camera rund my neck, search my surroundings for something to capture on film - a moment that might be lost seconds later, if not for this digital memory. She swapped town for country a year or two after diagnosis as the sounds and hazards of the city became too much for her.

Walking gives me a purpose and having a purpose keeps my brain working. I don't walk aimlessly: I'm always looking around to see what I can see. It's the social contact as well, the navigating of the walk that keeps my brain active. Walk alone to take photos or keep stopping to take photos.

dementia people walking around their neighbourhood give them not only a sense of freedom and empowerment but also make them feel that they are keeping their own disease at bay. Walking definitely give the author a purpose.

Maintaining a connection to nature is felt to be restorative, share excitement at spotting animals or the poleasure of looking at flowers during their da-to-day movements through their neighbourhood.  Pre-dementia days, I loved waking and seeing beautiful scenery but it was all about distance then. Now, she sees something different each day - the first snowdrops, the patterns the clouds make, the changing colour of the sky. Get so much pleasure from nature.

Time spent outdoors in nature was combined with restorative practices such as walking that help participant to manage life with dementia.

Walking in green and open spaces that were free of traffic and crowds...freedom of movment - a sense of autonomy to feel in control of their lives and to escape the pressure of isolation associated with their home life. 

 16. Social participation and support are strongly connected to good health and well-being throughout life. 

17. What is good for dementia person

17.1 SIGNAGE. Bright blue with white bold text. Contrasting colours, not blending colours on floors, walls and floors. Silver text on white signs are NOT good.
17.2 Carpets NOT good - swirling patterns, waves
17.3 Black marble floors with waves NOT good.
17.4 Noisy air conditioners