3 “Blessed are the poor in spirit,
for theirs is the kingdom of heaven.
4 Blessed are those who mourn,
for they will be comforted.
5 Blessed are the meek,
for they will inherit the earth …
On 4th and 5th May I will have the privilege of leading “Discussing Dementia 2: On Caring” at St. Peter’s Anglican Church in Tamworth. This builds on the first presentation “Discussing Dementia 1: An Overview” which I have been leading in Churches in NSW since 2016.
Each participant will receive a Summary handout of my presentation. This contains a number of web links to various sites, videos, audios and documents. It also refers to a number of documents. This Blog duplicates that Summary. It naturally falls short of the actual presentation which includes the Power Point presentation, actual Talk, and some interviews with Carers from Tamworth. If you’d like me to do the full presentation please contact me.
The “Discussing Dementia 2: On Caring” Presentation begins with a Blessing that was found in Booth Memorial Hospital, Cape Town, South Africa. It aligns with Jesus’ Beatitudes which we find in Matthew 5. How can we be a blessing to those who are ageing, not just those with dementia?
I invite you to read it – again and again. Each day God is blessing us – and calling us to be a blessing to others. Put another way, may we always remember that receiving God’s blessing is not primarily for our own benefit. Rather, God calls us to share His blessings. In a nutshell, may each of us “Be blessed to bless“.
With this in mind (and heart and spirit), I invite you to look at the Summary of my presentation. This can be downloaded below:
However, you will notice that the above Summary does not provide links to all of the resources that I discuss. That’s a shame, as I have collected some things that I believe you will find helpful. So, after I sign off you will find the Summary in full. Feel free to click on any of the links and download any of the resources. I hope that you will be blessed as you discover more about dementia and about caring. In turn, may it help you to bless others!
Be blessed, to bless,
“Discussing Dementia 2: On Caring” – Online Summary
A. Introduction & Blessed are they
B. “Discussing Dementia 1: An Overview” – Recap
See separate Handout:
C. On Caring
C.1 Who is the most important person? The person living with dementia or their carer?
The carer! “You can’t pour from an empty cup”.
C.2 We will explore:
- How do we best care for persons living with dementia (PLWD*)?
- How do carers best care for themselves?
- How do we helpfully care for the carers?
C.3 Terminology: Dementia Australia “Dementia Language Guidelines”.
C.4 Story: Why continue to visit your wife living with dementia?
Because I still know who she is!
C.5 A Carer’s story.
D. Organisations and Individuals
D.1 Dementia Australia: www.dementia.org.au.
a) Doing Stuff Together: Handout and Video.
c) Dementia Daily (https://www.dementiadaily.org.au/)
e.g. Imelda Gilmore: “Someone to come alongside” 19.4.2018.
d) HELP Sheets. See the website.
e) Dementia-Friendly Communities: dementiafriendly.org.au.
D.2 Carers Australia
- Website: carersaustralia.com.au.
- An article: Carers flag respite shortage, Australian Ageing Agenda Apr-May 2018:
D.3 Carer Gateway (Federal Government)
D.4 Kate Swaffer
- Reader’s Digest article (February 2017): Life beyond dementia.
- Book: “What the hell happened to my brain?”
- Sheet: “20 things not to say or do”.
D.5 Christine Bryden
- Before I forget: Christine Bryden’s struggle with early-onset dementia 22/12/2015: ‘The Doctor said, “You’ve got about five years until you are demented, and then another until you die.”’ ‘It was,’ Bryden says, ‘just unbelievably cruel.’
- Who will I be before I die?
- Dancing with dementia
- Will I still be me?
- “Nothing about us, without us! 20 years of dementia advocacy”
E. The five griefs of dementia
Grief is a natural (God-given) response to loss and death.
The 5 griefs of dementia:
- When the person’s symptoms first begin.
- When the person is first diagnosed with dementia.
- When the person enters residential care.
- When the person is dying and dies.
- When the carer loses their role as carer.
Story: “Her heart remembered” by Lynne Walter Budnik.
F. Film: “10 Glorious seconds”
G. Where is God in dementia?
G.1 Parable of the Good Samaritan (Luke 10:25-37) – Rephrased by me.
G.2 Jesus’ Great Commandments
Jesus’ two great Commandments: “Love the Lord your God with all your heart, mind, soul and strength. Love your neighbour as yourself”. Explanation: Heart = body. Mind = brain. Soul = Spirit. So we are Body + Brain + Spirit.
G.3 The breath of life
“the LORD God formed the man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being” (Genesis 2:7).
G.4 Spiritual renewal
Our God-given spirit does NOT suffer from ageing or dementia. It remains whole, well and strong. “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day” (2 Cor. 4:16).
G.5 Spiritual Glory: Charles Wesley’s hymn “Love divine, all loves excelling”
(verse 3): changed from glory into glory!
G.6 Psalm 139: Our Daily Bread 22/10/2014.
G.7 Dementia-Friendly Worship
- Book of Common Prayer article (9/10/2016)
- “Meaningful Ageing”: Dementia-Specific Christian Worship Service Handbook
G.8 John Swinton
- Paper: “Gentle Discipleship.
- Book: “Dementia – Living in the Memories of God”
G.9 Hammond Care: Faith for Life
G.10 Teepa Snow and Lin Possell
- The gift of those living with dementia: they live in the present moment!
- Book: “Dementia Guide for Faith Communities and Leaders”. Excerpt: “I am living with dementia” pp.69-70.
- Videos e.g. Spirituality in Dementia Care.
G.11 A Carer’s Story #2
H. Dementia and Technology
H.1 Is there an App for that?
- BPSD / Care4Dementia / Cultura / The Dementia Friendly Home / Google Earth / Photo Booth / Sound Hound / YouTube / amuseIT
- My compilation: Is there an App for that? (See an earlier entry in this Blog).
H.2 EDIE (Educational Dementia Immersive Experience)
H.3 Centre for Cultural Diversity and Ageing
- Site was recommended in the ‘Australian Ageing Agenda’ Mar-Apr 2018 p.56.
H.4 My Aged Care (Federal Government): https://www.myagedcare.gov.au/
I.1 Sense of humour: Keep a sense of humour! “Don’t take yourself too seriously!”
- Respite is a form of self-care. The dementia journey is a marathon.
- “Respite care can support you and your carer with a break for a short period of time. This gives carers the chance to get to everyday activities or go on a planned break. Respite care may be given informally by family, friends or neighbours, or by formal respite care services” (myagedcare).
- Give your children the opportunity to care!
- Search the Dementia Australia & My Aged Care websites.
- Dementia Australia has 2 Help sheets (one for the driver and one for the carer). See also https://www.dementia.org.au/resources/dementia-and-driving.
- NRMA and Dementia Australia brochure: Staying on the move with dementia: https://www.dementia.org.au/sites/default/files/NSW-Staying-on-th-move-with-dementia-booklet.pdf
I.4 UTAS: https://mooc.utas.edu.au/courses
- Understanding Dementia Massive Open Online Course (MOOC)
- Preventing Dementia MOOC
- Bachelor of Dementia Care
I.5 Risk Factors for Dementia
- The Lancet (Dec. 2017) – Can dementia be prevented? See Blog: “On Caring 2”.
- Alzheimer’s Research UK – Reducing your risk of dementia. See the site
J.1 Project We Forgot (21.4.2018) – Living the long goodbye with my grandpa and dementia. See https://projectweforgot.com/your-aid/country/canada/living-the-long-goodbye-with-my-grandpa-and-dementia/.
J.2 Films e.g. Still Alice / The Iron Lady / The Notebook
J.3 TV: Mother & Son
J.4 Radio e.g. ABC “All in the mind”. http://www.abc.net.au/radionational/programs/allinthemind/
J.5 Printed material
- Caregiver’s 10 Commandments.
- Answering the same questions over and over
- Caring for a Dad with dementia, blindness and hearing loss
- Early signs and symptoms of Alzheimer’s
- What to do if you think that a loved one has dementia
J.6 Young Onset Dementia
- Book by Hilda Hayo and others: “Young Onset Dementia: A Guide to Recognition,
- Diagnosis, and Supporting Individuals with Dementia and their Families”.
- Table of Contents: Chapter 5: The Impact … on Family Relationships.
J.7 Sally Magnusson
- Book: “where memories go”.
K. Final Questions and Answers
- “God still remembers me” by Paul Hornback.