'Dementia, the unforgettable impact on caregivers.'

Dementia Awareness & Resources. Guides for carers, and documentaries

Below are resources and recommendations I’ve shared many times. There are descriptions, explanations, support tools and tips for both the caregivers and the sufferers of Dementia.

Themes, descriptions, and symptoms of Dementia may appear similar for everyone. However, I believe every experience each sufferer and each caregiver lives through is a unique, rollercoaster journey because every person and each relationship is unique.

My father had vascular dementia. In addition to the cornucopia of illness he suffered. The dementia robbed him of his ability to reason from A to B to C.

Before the significant hospitalisation in 2015, he had soldiered on and survived various operations and treatments. He was a proud, charismatic, gregarious and somewhat mischievous man who taught himself twelve or thirteen languages and cared for his patients as a consultant geriatrician until his rheumatoid arthritis forced him into retirement early. The irony, right?

Several events contributed towards his vascular dementia. Looking back, the watershed moments were clumped around 2015-2016. From soldier, protagonist to defender, trying to survive.

In the worst moments, he swung from passive-aggressive outbursts, shouting at us his ‘jailers’ - who were preventing him from independently doing things and, moments later, crying with frustration and self-recriminations.

‘Tennis ball in the throat’ and ‘nails in palms’ were fulcrum-reaction moments. Sometimes, we cried together. Other times, I had to grit hard, holding myself in check while I quietly and slowly comforted and reassured him.

To others, he appeared fine. He revved up his energy to put on a front; he used eye contact and signals for me to cover the ‘gaps’; he used humour to gloss over a mistake; he constantly asked others about themselves and their family to divert attention away from his inabilities.

‘Enough about me; more importantly, how are YOU doing and how’s YOUR family, the children?’

2 phrases I came to hate:

‘More importantly’,

‘Just two ticks…give me two ticks, okay?’

The latter was said repeatedly over the course of 15-20 minutes. It hurt not because ‘he wasn’t getting on with things’ but because it repeatedly signalled that Dad had no real sense of time. It didn’t matter how long he sat there, it hurt that he was dissociated from things happening around him. [Due only in part to the dementia; mostly a reflection of his overall health]

I used to think of myself as a ‘Lady in waiting’, hovering, waiting, anticipating his needs and primed to read his cues for help. Caregivers become adept and attuned to the needs of their loved ones. This translates into constant hypervigilance, watching for cues and holistic changes.

I’ve included a few video documentaries that portray the struggles of sufferers and caregivers. [Caveat the Louis Theroux video is stark and painful about the real long term effects, so if in doubt, don’t watch it]

If you’re feeling a similar strain, I recommend contacting others for support. Connect with other caregivers. Friends and family are great, but they may not ‘get it’.

I found Carers UK was the most useful Forum for me. Why? Here are some helpful criteria to use:

• It’s anonymous

• There’s always someone online in the community (carers don’t get much sleep!)

• Mutual empathy, appreciation and no preaching

• Similar to peer mentoring or mentoring in general, carers share tips, experience and compassion AND discuss what others find taboo around poop, shit, incontinence and anger, frustration and helplessness.

• There are weekly online meetings ‘Cuppas’

• There are experts at Carers UK who can be called (helpline).

• Anyone can flag concerns for a member to the support team

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Here are the resources:

Organisations: Global, UK, Europe, USA

Resources incl. online courses, publications, and video documentaries

Other publications

Global Organisations

World Health Organisation: What is Dementia

WHO Dementia: News, Publications, Infographics and Videos

9 May 2019 WHO (PDF) Support Manual for Dementia:

UK Organisations

NHS: What is Dementia

Dementia UK: Click here

Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?

Alzheimer’s Society (UK) https://www.alzheimers.org.uk/about-dementia/types-dementia

Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here

The essential guide when you’re caring for a person with dementia

When someone close to you is diagnosed with dementia, it can be difficult to know which way to turn. Our comprehensive guide – Caring for a person with dementia – can be your go-to companion. 

It’s packed with information and advice. We have consulted with many carers, who have told us about the reality of supporting someone with dementia. Their experiences and insight have shaped this guide. 

European Organisations

Alzheimer Europe Click Here There is a directory of organisations underneath this ‘umbrella’ organisation.

US Organisations

Centers for Disease Control and Prevention: Click here

Alzheimer's Association: Click here

Kerri

at the Publication ‘The Other Parenthood’ used the helpline and personally recommended their support.

Click here to go to the Helpline page on the website.

Canadian Organisations

Alzheimer Society: Click here

Resources

1. An online course by FutureLearn. A UK organisation: I used this to learn more about the different types of Dementia in 2015.

2. November 19, 2022. The NIH National Library of Medicine (USA) Publication: Major Neurocognitive Disorder (Dementia) Prabhu D. Emmady; Caroline Schoo; Prasanna Tadi.

3. 2015 BBC Documentary on Dementia: A Month in the Life. (Duration 13:01 minutes) Wendy, Keith and Christopher are three of more than 500,000 people with dementia in the UK living at home. For the BBC's Victoria Derbyshire programme, they filmed parts of their lives over a month

Victoria Notes:

5.20 Biggest Fears: Becoming someone else, Loss of Independence, Not recognising the 2 people that mean so much to her.

7.38 Early morning ritual in the bathroom: Little strategies that help me.

9.20 Breakfast: honey and then butter, it doesn't matter which way they go on the toast

Keyword moments:

• The fog: 'heart thump', 'lose my words', 'frustration and anger at not being able to better deal with it.’

• A big fear is the loss of independence.

• Sufferers and caregivers develop bespoke strategies to cope and move forward in their daily lives and specific strategies to remember things.

• Sufferers may lose words but always remember how the event/conversation/person made them feel.

4. 26 April 2012 BBC Documentary. Louis Theroux. Extreme Love: Dementia. In USA. (Duration 59 minutes) .

Victoria notes: This is painful to watch in places partly because Louis is educating himself and viewers on the sufferer and caregiver interactions. It is a heart-wrenching journey and testimony. The evolution of his awareness and understanding is driven home by the stark examples of memory loss (on the 4th floor) and interviews with the family. Caveat: For caregivers of Alzheimer's and dementia sufferers, this may be too much to watch.

Documentary Introduction: Louis travels to Phoenix, Arizona - the capital of dementia care. He spends time at Beatitudes, a residential institution, and also with those looking after loved ones at home to try to understand the struggle of living in a world of encroaching shadows - and of keeping relationships alive in circumstances that can be among the strangest and most challenging imaginable. https://www.bbc.co.uk/iplayer/episode/b01gvt26/louis-theroux-extreme-love-series-1-2-dementia

5. June 2 2023. NHK World -Japan Documentary. (Duration: 49:05) A neuroscientist with a mother diagnosed with Alzheimer’s disease must balance her role as daughter and caregiver and that of a scientific researcher looking for answers. Click here

6. May 5 2019. 60 Minutes USA Frontotemporal Dementia (FTD) (Duration 14:05 minutes) Click here. This is not Alzheimer's, where memory is lost. FTD is the number 1 form of Dementia for those under age of 60. Sufferers lose recognition of other people OR of themselves. Speech, personality, and judgement are affected.

Other Publications

1. 'In Caring for aging parents, can we see assisted living as assisted loving?'. By

   Amy Brown
   . Publication: 'Living in 3D: Divorce, Dementia and Destiny'.

2. 'The Long Goodbye. Navigating my parent's dementia, and my brain's attempt to let it consume me'. By

   Anna De La Cruz
   . Publication: 'Gen Xandwich'

3. A Little Life List: When You're In The S***. Grace, Solace, and the Uncharted Mystery of Alzheimer's. By

   Alice Kuipers
   . Publication: ‘Confessions and Coffee’.

4. ‘A letter of love to Barbara and the powerful impact of music’ by

   Charlene Alofs
   at The Wicked Pissah. ‘What I found interesting and fascinating were the positive effects that music had on those suffering from dementia—reduced depression, agitation and anxiety. As language and other memories had disappeared, the memory of music remained.’

5. Learning to ask for help. Our "awkward, brave & kind" email and the response we received. By

   Sarah Coomber

6. A heartfelt article and compilation of articles written by Amy. For dementia caregivers, the heartache of impossible choices. Why every caregiver needs to find her own path--and a compendium of first-hand experience and resources to help light her way. By

   Amy Brown

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If you’ve found a resource that has helped you, please share it in the comments.

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