Category Archives: A Meeting of the Minds

Webinar reminder: Rehabilitation and Dementia (24/25 August)

James McLoughlin-Eventbrite

  • August 24, 2016 ‚Äď 2.00 pm (PDT ‚ÄstSan Francisco) USA
  • August 25, 2016 ‚Äď 6.30 am Adelaide (ACST) ¬†AUSTRALIA

Please note:¬†we have set up this event based on the time zone in Australia, to ensure the registration system does not close ahead of the Webinar ‚Äď but ¬†‚Äď it is still the same time for everone, August 24 in the USA/UK/EU and August 25 in Australia/NZ. Apologies for not promoting it here sooner, even though we did sent out the detail sin our recent Dementia Alliance International e-News.

You can register here…

About Jame‚Äôs session:¬†Neuro physiotherapists support and teach people how to maximise their recovery and or potential. They use the knowledge of neuroscience and brain plasticity to improve mobility, help people to learn new skills and to transition in their lives as much as possible, to engage in what is important to them ‚Äď their personal goals and individual expectations. They support improving mobility that enables you to be independent and safe, without falling over and causing injury, and to have the confidence to continue to remain active. He says:

‚ÄúDementia has previously not been prescribed rehabilitation ‚Äď which we need to reverse. Only 17 years ago, there were only 5 papers on rehab for MS whereas now there are about three new papers per day ‚Äď this needs to happen for dementia.¬†Improving and maintaining function is possible, and evidence is much clearer in supporting this including for people with dementia, not just other neurological disorders.‚ÄĚ

James will discuss the value of rehabilitation for people with dementia, allowing a lot of time for questions!

* Please note the question time is not part of our video recording of the event uploaded to our YouTube channel following the event, so you will need to register to ask questions or listen to others and Jame’s responses .

About James:¬†Associate Professor James McLoughlin is an experienced Neurological Physiotherapist with degrees in both Physiotherapy (UniSA) and Clinical Neuroscience (University College London). James has also completed a PhD in balance and gait at the University of New South Wales.James is part-time academic at the Department of Rehab, Aged and Extended care at Flinders University and coordinator of the Neurological Physiotherapy and Neurological Occupational Therapy Masters programs. In addition, James is director of a large neurological and vestibular rehabilitation practice in Adelaide,¬†neurophysiotherapy.com.au¬†James describes himself as ‚Äėa great scavenger of information ‚Äė and is passionate about providing the best care and support for his patients, in addition to providing relevant neuroscientific and clinical education for health professionals, patients and carers. James has conducted over 25 professional development courses since 2009 and has been an invited speaker at 13 different local, national and international clinical and research conferences.

Wednesday August 24, 2016, USA/CA/EU/UK:

Start Time (USA/CA/UK/EU):

  • 2.00 p.m. Pacific Time (San Francisco);
  • 3.00 p.m. Mountain Time (Denver);
  • 4.00 pm Central Time (Chicago)
  • 5.00 p.m. Eastern Time (Washington DC);
  • 2.00 p.m. Vancouver, Canada;
  • 11.00 a.m. in Honolulu, Hawaii;
  • 10.00 p.m. in the UK;
  • 11.00 p.m. in Paris and Budapest

Thursday August 25, 2016 AUSTRALIA/NEW ZEALAND/JAPAN

Start time (Australia/NZ/Japan/Indonesia)

  • 6.30 a.m. in Adelaide;
  • 7.00 a.m. Sydney, Brisbane, Canberra, Melbourne;
  • 5.00 a.m. in Perth;
  • 9.00 a.m. in Auckland, New Zealand;
  • 6.00 a.m. in Tokyo, Japan

The WEBINAR will run for 1.5 hours.

To check the time in your city, if not listed above, please open the link here…

You will receive an email confirmation that contains login details and instructions on how to join the online Webinar.

COST TO ATTEND:

Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

We also have a NEW CORPORATE RATE.

  • DAI MEMBER: FREE
  • UNEMPLOYED CARER: FREE
  • EMPLOYED PERSON: $US45 Most will be able to claim the cost of the tickets as a tax deduction.
  • UNEMPLOPYED STUDENTS:¬†$US15 (please send proof of your student ID to¬†[email protected]¬†)
  • **NEW** CORPORATE RATE¬†allowing organisations to register up to 10 staff per event:¬†$300 per Webinar

DAI has to rely on an HONOUR registration system, and trust that if you are employed, you will not instead register as an unemployed family supporter (carer) or as a member of DAI. The modest fee for this service supports your education, and also supports our work, which importantly, directly enables people with dementia to support themselves.

If you need a¬†certificate of attendance, please email us at¬†[email protected]

You can register here…

Your donations do make a difference:

  • $US 5.00¬†covers the average cost of one of our monthly bank fees
  • $US 60.00¬†covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00¬†covers the average monthly cost of the MailChimp subscription
  • $US 300.00¬†covers the current cost of 3 months of website management fees

Option: Our nonprofit partner, PayPal charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Webinar: The Dementia Friendly Kiama Community Pilot Project

Screen Shot 2016-07-11 at 10.32.24 AM

Your next online Webinar “A Meeting of The Minds”, is being presented by Nick Guggisberg and DAI member Dennis Frost,¬†“The Dementia Friendly Kiama Community Pilot Project”

July 27, 2016 – 1.30 PM (PDT – San Francisco) USA
July 28, 2016 Р6.30 AM Sydney (AEST)  AUSTRALIA

Please note: we have set up this event based on the time zone in Australia, to ensure the registration system does not close ahead of the Webinar Рbut  Рit is being held on July 27 in the USA/UK/EU and July 28 in Australia/NZ/Japan.

Register here…

Many people with dementia now see the Kiama DFC Pilot Project as the GOLD STANDARD of any Dementia Friendly Community project or initiative in the world. Please join us to find out why. 
Last month, Nick Guggisberg and Melissa Andrews, on behalf of the project, received a National Local Government Innovation Award in the Access and Inclusion category. 
Congratulations to them, and to the full team behind the pilot project, as well as the members of the Southern Dementia Advisory Group (alias, the Kiama DAG’s), led by Dennis Frost.

About the Webinar session: This Project is a partnership between Kiama Council, The University of Wollongong (UOW), Alzheimer’s Australia and the Kiama Community. The project uses an Action Research model to track progress, and works within a community development framework.

Basic Structure of the Project

  • Kiama Dementia Alliance ‚Äď individuals, service & peak organisations, and people with dementia.
  • Dementia Advisory Group – People with Dementia (PWD) and their carers/supporters/partners, who advise on and oversee the whole project including participating in all education sessions.

Having an active Dementia Advisory Group from the outset makes this project unique.

Action Plan includes:

  • Training volunteers to support PWD to participate in community activities,
  • Information sessions, public lectures and education to raise awareness,
  • Making the local environment more accessible

Project Objectives:

  • Increased community awareness and understanding of dementia
  • Broadening of opportunities for social participation for PWD
  • Dementia-friendly organisations & businesses
  • Improvements to the physical environment through using the UOW Environmental Audit Tool
  • Mapping of Dementia-friendly organisations and places

Already there is anecdotal evidence of substantial progress towards these objectives.

Initial research surveys conducted at the start of the project will be repeated in 2016 to measure change in the Dementia-friendliness of Kiama.

About Nick: Nick spent the first half of his adult life experiencing broader Australia, playing and teaching music throughout the whole continent while largely based in Alice Springs.  Nick drew on his broad range of life experiences during his studies to hone and shape these experiences and insights into skills and knowledge that he could apply professionally as a Social Worker. Since graduating with a Social Work degree, Nick has largely worked in the Community Development field working with Social Housing Tenants, managing a Youth Service, managing a Foster Care program, and currently works as the Manager Community & Cultural Development for Kiama Municipal Council. It is in his role at council that Nick oversees the council’s involvement in the Dementia Friendly Kiama Project. As a Social Worker, social justice is at the heart of everything Nick turns his attention to, so when the opportunity to facilitate Kiama Council joining the partnership with Wollongong University and Alzheimer’s Australia to pilot dementia-friendly strategies in Kiama, Nick jumped at the opportunity.

About Dennis: Dennis was diagnosed with younger onset Front-Temporal Dementia 3 years ago at age 59. Prior to that worked part time as a teacher in TAFE and part time as IT support engineer in TAFE as well as running his own  IT support business for 25 years. Since diagnosis Dennis has been working tirelessly to promote awareness of Dementia, to advocate for people with Dementia and to break down social stigmas associated with dementia. Dennis is chairman of the Dementia Friendly Kiama Project’s Dementia Advisory Group (and some might say a real DAG). In April 2016 Dennis will travel to Budapest, Hungary to share the successes of the Dementia Friendly Kiama Project  to the 31st International Conference of Alzheimer’s Disease International.

Wednesday July 27, 2016 (USA/CA/EU/UK):

Start times:

  • 1.30 p.m. Pacific Time (San Francisco);
  • 2.30 p.m. Mountain Time (Denver);
  • 3.30 pm Central Time (Chicago; Des Moines)
  • 4.30 p.m. Eastern Time (Washington DC);
  • 1.30 p.m. Vancouver, Canada;
  • 10.30 a.m. in Honolulu, Hawaii;
  • 9.30 p.m. in the UK;
  • 10.30 p.m. in Paris and Budapest

Thursday July 28, 2016 (AU/NZ/JAPAN)

Start times:

  • 6.30 a.m. in Brisbane;¬†Sydney, Canberra, Melbourne;
  • 4.30 a.m. in Perth;
  • 6.00 a.m. in Adelaide;
  • 8.30 a.m. in Auckland, New Zealand;
  • 5.30 a.m. in Tokyo, Japan

The WEBINAR will run for 1.5 hours.

To check the time in your city, if not listed above, please open the link here: 

http://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+A+Meeting+of+the+Minds%3A+Introducing+the+Kiama+Dementia+Friendly+Community+Project%2C+July+2016&iso=20160728T0630&p1=240&ah=1&am=30

You will receive an email confirmation that contains login details and instructions on how to join the online Webinar. 

Please note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

We charge a minimal fee of $45 USD for anyone who is employed. Most will be able to claim the cost of the tickets as a tax deduction.

Students are charged¬†$15¬†USD¬†– please send proof of your student ID to¬†[email protected]

We have to rely on an HONOUR registration system, and trust that if you are employed, you will not instead register as an unemployed family supporter (carer).

The modest fee for this webinar supports your education and our community, and also supports our work, which directly enables people with dementia to more proactively and positively support themselves.

Register here…

 

If you need a¬†certificate of attendance, please email us at¬†[email protected]

The Webinar is FREE for people with dementia and unemployed family carers.

Your donations are always appreciated and do make a difference:

  • $7.00¬†USD¬†covers the average cost of one of our monthly bank fees
  • $50.00¬†USD¬†covers the average of the cost of our monthly Zoom subscription fee
  • $100.00¬†USD¬†covers the average monthly cost of the MailChimp subscription
  • $300.00¬†USD¬†covers the current cost of 3 months of website management fees

Option: Our nonprofit partner, PayPal charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International. Donations can be made here

Communication Challenges ‚Äď Being Curious, Cautious, and Courageous, by Teepa Snow

In March, we hosted a Webinar with Teepa Snow, which was informative, and very well attended. This week, as part of our Dementia Awareness Week UK #DAW2016 activities, we are adding the recording of it here. Our gratitude to Teepa for her time ad wisdom, and deep knowledge about how to support people with dementia.

Together, we earn from each other, and together respecting and listening to each others unique view points, we can all make a difference.

Please do consider donating, especially if you are employed as you would have paid $45 USD to have attended to listen to Teepa on the day. Our current fundraising campaign¬†can be accessed here…

Your donations help people with dementia support themselves to live with a higher quality of life, and more independence, as well as reducing stigma and discrimination.

Watch the video of Teepa here:

Download the slides here: Teepa Snow: Communication Challenges РBeing Curious Cautious and Courageous

 

Sexuality and dementia: Right Risks and responsibilities

Rhonda Nay

As part of DAI’s¬†Dementia Awareness Week UK 2016 [#DAW2016] blog series ¬†we are adding the recording of the presentation by Emeritus Professor Rhonda Nay given to members and supporters earlier this year. It was a well attended webinar, and the most topical and active session we have had yet. Sincere thanks to Rhonda for giving up her rime to support us.

You can download her power point slides here: Sexuality and dementia: Right, Risks and responsibilities and watch the video here:

Don’t forget, your donations make a difference to the lives of people with dementia, and help DAI continue to support them. Please donate to our fund raising campaign if you can afford to.

Communication challenges: Being Curious, Cautious and Courageous

Teepa Snow-2

  • Wednesday 27, 2016 (USA/UK/CA/EU)
  • Thursday 28, 2016 (AU/NZ/JAPAN)

Communication challenges: Being Curious, Cautious and Courageous

About Teepa’s session: Living life with dementia inside is an ever-changing experience. Sometimes challenging, sometimes boring, sometimes overwhelming, and sometimes just fine. But it is not like it used to be, no matter how much we might wish it was so. One difficulty is that others may not experience you and your perceptions the same way you do. It is often easier for me to blame the change on you and your dementia than look in the mirror and notice how much of what is happening might be due to how I am being different or changing. With dementia, each of us is not always sure about what each person thinks, remembers, hears, sees, feels, but it is easy to react rather than respond. In this session, I will provide six puzzle pieces to help each of us consider the gifts of curiosity, caution, and courage to help when we are trying to work and live with one another and we have dementia in the house!

About Teepa: Teepa is an occupational therapist working as a dementia care and dementia education specialist. She has over 33 years of clinical experience in the field of geriatrics and dementia care, as well as having provided care to family members with dementing illnesses. Currently, she has an independent practice as well as a clinical appointments with Duke University’s School of Nursing & UNC-CH School of Medicine. She provides interactive and creative educational and practical hands-on training sessions to organizations and providers throughout the US & Canada. She has been actively involved in teaching and clinical research projects throughout her practice career.

Wednesday April 27, 2016, USA/CA/EU/UK:
Start Time (USA/CA/UK/EU):
2.00 p.m. Pacific Time (San Francisco AND Oregon, Portland);
3.00 p.m. Mountain Time (Denver);
4.00 pm Central Time (Chicago)
5.00 p.m. Eastern Time (Washington DC);
2.00 p.m. Vancouver, Canada;
11.00 a.m. in Honolulu, Hawaii;
10.00 p.m. in the UK;
11.00 p.m. in Paris and Budapest

Thursday April 28, 2016 AUSTRALIA/NEW ZEALAND/JAPAN
Start time (Australia/NZ/Japan/Indonesia)
7.00 a.m. in Brisbane;
7.00 a.m. Sydney, Canberra, Melbourne;
4.00 a.m. in Perth;
6.30 a.m. in Adelaide;
9.00 a.m. in Auckland, New Zealand;
6.00 a.m. in Tokyo, Japan

The WEBINAR will run for 1.5 hours, and you can REGISTER here…

To check the time in your city, if not listed above, please open the link here:
http://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+A+Meeting+of+the+Minds+with+Teepa+Snow%2C+April+2016&iso=20160427T14&p1=202&ah=1&am=30

You will receive an email confirmation that contains login details and instructions on how to join the online Webinar.

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

We charge a minimal fee of $US45 for anyone who is employed. Most will be able to claim the cost of the tickets as a tax deduction.

Students who are full time and unemployed are charged $US15 ‚Äď please send proof of your student ID to [email protected]

Please note: We rely on an HONOUR registration system, and trust that if you are employed, you will not instead register as an unemployed family supporter (carer). The modest fee for this service supports your education, and also supports our work, which importantly, directly enables people with dementia to support themselves.

If you need a certificate of attendance, please email us at [email protected]

The Webinar is FREE for people with dementia and unemployed family care partners.

REGISTER here…

Please note: we have set up this event based on the time zone in Australia, to ensure the registration system does not close ahead of the Webinar ‚Äď but¬† ‚Äď it is still the same time for everyone, April 27 in the USA/UK/EU and April 28 in Australia/NZ.

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

Your donations are always appreciated and do make a difference:

  • $US 5.00¬†covers the average cost of one of our monthly bank fees
  • $US 50.00¬†covers the average of the cost of our monthly Zoom subscription fee
  • $US 100.00¬†covers the average monthly cost of the MailChimp subscription
  • $US 300.00¬†covers the current cost of 3 months of website management fees

Option: Our nonprofit partner, PayPal charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Psychologist Denise Craig presents “The Dementia Enablement Guide”

Last week we had the privilege and pleasure of a supporter of DAI, and friend of our members, senior psychologist Denise Craig from Cairns in Queensland. To introduce the presentation, Denise said:

When my mother was diagnosed with Alzheimer‚Äôs and Vascular dementia at the age of 65, dementia became my working life‚Äôs vocation. I was fortunate enough to achieve a position where I could assist people diagnosed with dementia, and those providing care and support, both through face to face assistance and also ‚Äėbigger picture‚Äô systemic strategies.

In 2012 as a private undertaking I established a Facebook page. Via posts and private messages I have had the opportunity to hear from many people with rich and diverse stories to tell. Through social media I noticed a pattern of criticism of health professionals, namely that there is little help after diagnosis.

People diagnosed with dementia, care partners, family & friends, can find it hard to come to terms with a dementia diagnosis. Bearing in mind that no two people will have identical experiences, generally speaking dementia is an illness for which support is imperative.

Support includes both early intervention & ongoing assistance to adjust to changes, develop coping strategies, maintain maximal independence & improve quality of life. Holistic assistance which encourages people to live to their personal potential is the cornerstone of good care. By adopting an enabling approach focused on preferred occupation & meaningful activity, independence & well-being, people diagnosed with dementia & their significant others have an opportunity to live to their post-diagnosis potential.

Twelve months ago whilst meeting Kate Swaffer in Melbourne, we shared a robust conversation about rehabilitative/enablement opportunities. I committed to the construction of a ‚ÄėDementia Enablement Guide‚Äô to assist GPs to discuss options which consumers might find helpful.

Through my role within the Qld Statewide Dementia Clinical Network I established a multidisciplinary group which completed this project. A group of people living with dementia, care partners, clinicians and academics reviewed the document and provided valuable feedback. The tool is being trialled in Cairns and Kiama, NSW (as a part of their DFC project), and a consumer version is nearing completion.

The Dementia Enablement Guide is freely available via Qld Health’s website at https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf

You can also download Denise’s power point slides here Denise Craig presents The Dementia Enablement Guide to DAI

Dr Al Power – Living with dementia: New perspectives

This week we are adding the recording from the webinar¬†by Dr¬†Al Power held in January this year. Al discusses information and his thoughts about drug use and misuse, and he challenges the ‚ÄúBPSD‚ÄĚ concept, and shares so much more. You will find it enlightening, perhaps confronting if yo work in dementia care, but extremely informative. Our sincere thanks to Al for his continuing support of people with dementia.

You can download the power point slides here Dr Al Power DAI A Meeting of the Minds Webinar 27-28 Janury 2016

DAI Webinars and events are held to support everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

If you are in paid employment, please consider donating the registration fee of $35.00 that you would have been asked to pay if you had attended on the day.

Webinar – Dementia Enablement Guide: A new post-diagnostic pathway

Denise CraigDAI A Meeting of The Minds March 2016 Webinar.

Guest speaker: Denise Craig

About Denise’s session: ¬†It has always seemed obvious that we‚Äôre all in ‚Äėthe business of dementia‚Äô together. We either have a diagnosis of dementia, care about someone who does; will one day be diagnosed or support someone who is; provide professional support for people with dementia, or any combination of the above.

Speaking to consumers and monitoring social media, it is clear that many people with dementia feel misunderstood and unsupported by some sectors of the health care system. Many report being denied GP referral to health professionals because the potential benefits are not well understood. GPs and other health professionals are sometimes unaware of the empowering lift that can result from specialised assistance to maintain function and quality of life.

When a man diagnosed with a frontotemporal dementia lost his job and experienced low mood, his GP told me¬†‚ÄėNo one can help him, he has dementia‚Äô.¬†If you have dementia you may choose not to accept external support, but I‚Äôd like to see you given the choice.

To address this, Queensland Health has supported a multidisciplinary clinician and consumer group to construct a post-diagnostic pathway tool which we‚Äôve called a Dementia Enablement Guide. The guide seeks to encourage GPs to consider a multidisciplinary approach to post-diagnostic support. The tool is now being trialled at sites across Australia. This presentation will discuss the creation of the guide and highlight the concept of ‚Äėpathways‚Äô to onward referral to supportive health professionals.

About Denise:  Denise is the senior psychologist of the Cairns Memory Service, a member of the Queensland Clinical Senate, and the first non-physician co-Chair of the Queensland Statewide Dementia Clinical Network. Through these roles she encourages systemic improvements to dementia care. She has a postgraduate Diploma in Older Persons Mental Health and is a qualified Assessor and Trainer. Denise chaired the construction of a Younger Onset Dementia Diagnostic Pathways tool as well as the Dementia Enablement Guide. She is the proud recipient of a 2015 Dementia Training Study Centre Fellowship which, together with Qld Health, is supporting her efforts to promote enablement philosophy amongst health professionals. Having cared for her mother who experienced Dementia, she now provides counselling, advice and advocacy with a focus on enablement and living post-diagnostic life to the fullest. She created and administers a support group for people with Young Onset Dementia on Facebook and she says her goal is to help empower and motivate individuals to maximise their quality of life.

REGISTER here…

DATE: Wednesday, March 23, 2016 (USA/UK/CA), and Thursday, March 24, 2016 (Australia/NZ/Japan/Indonesia)

  • The registration¬† link only allows you to select March 23, regardless of what time zone you are in.

TIME:  3:00 PM (GMT- 6:00) Central Time (US and Canada), 7:00 AM (AEST)

Start Time (USA/CA/UK/EU):

  • 1.00 p.m. Pacific Time (San Francisco);
  • 2.00 p.m. Mountain Time (Denver);
  • 3.00 pm Central Time (Chicago)
  • 4.00 p.m. Eastern Time (Washington DC);
  • 1.00 p.m. Vancouver, Canada;
  • 10.00 a.m. in Honolulu, Hawaii;
  • 8.00 p.m. in the UK;
  • 9.00 p.m. in Paris and Budapest

Start time (Australia/NZ/Japan/Indonesia):

  • 6.00 a.m. in Brisbane;
  • 7.00 a.m. Sydney, Canberra, Melbourne;
  • 4.00 a.m. in Perth;
  • 6.30 a.m. in Adelaide;
  • 9.00 a.m. in Auckland, New Zealand;
  • 4.00 a.m. in Indonesia;
  • 5.00 a.m. in Tokyo, Japan

The WEBINAR will run for 1.5 hours.

To find out the start time in your city if not listed above, http://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+A+Meeting+of+the+Minds+with+Dr+Denise+Craig&iso=20160323T15&p1=64&ah=1&am=30

You will receive an email confirmation that contains login details and instructions on how to join the online Webinar.

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

We do charge a minimal fee of $US35 for anyone who is employed. Most will be able to claim the cost of the tickets as a tax deduction.

The nominal¬†fee for this service supports your education, and also supports our work, which importantly, directly supports people with dementia to support themselves.¬†If you need a certificate of attendance, please email us at¬†[email protected]

The Webinar is FREE for people with dementia.

Care partners are usually no longer in paid employment, and therefore if unemployed, tickets also remain free.

Your donations are always appreciated and do make a difference:

  • $US 5.00¬†covers the average cost of one of our monthly bank fees
  • $US 50.00¬†covers the average of the cost of our monthly Zoom subscription fee
  • $US 100.00¬†covers the average monthly cost of the MailChimp subscription
  • $US 300.00¬†covers the current cost of 3 months of website management fees

Option: Our nonprofit partner, PayPal charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Thoughts on dementia by the late Dr Richard Taylor

Screen Shot 2015-07-28 at 10.18.21 amThe late Dr Richard Taylor, a founding member of Dementia Alliance International (DAI), impacted the lives of literally thousands of people around the world. Whether it was a person with dementia, a family care partner or professionals, his web was huge.

For our¬†new members, I felt you¬†may also benefit from reading them; I found the following two excepts on Dr Google not too long after my diagnosis, and recall feeling like they almost literally ‘saved my life’ from the downhill spiral of Prescribed Disengagement¬ģ‚ĄĘ. I have not doubt others who knew and loved Richard, and still miss him greatly, will also enjoy reading words from his early days after the¬†early days following his¬†own diagnosis of younger own dementia.

Finding the right words

After a lifetime serving people with mental illnesses, writing helps this psychologist and Alzheimer’s patient make sense of his own mind.

By Amy Novotney
Monitor staff
Print version: page 24

For more than 40 years, Houston clinical psychologist Richard Taylor, PhD, helped troubled teenagers gain control over drug and alcohol addictions and curb suicidal thoughts. Today, he serves a new troubled client: himself.

In 2002, neurologists diagnosed Taylor, then 58, with “dementia, probably of the Alzheimer’s type,” and for about three weeks, the psychologist cried every day, he says. But rather than join the nearly 40 percent of people with Alzheimer’s disease who become clinically depressed, Taylor began writing about his fears-and triumphs-as a way to “gain control over what was happening between my ears,” he says.

“Writing became my therapy without a co-pay,” Taylor recalls in one of 82 essays he wrote for his book “Alzheimer’s From the Inside Out” (Health Professions Press, 2007). “I wrote to reassure myself that some of the old me was still there, because I was in transition in ways no one seemed to understand.”

His narratives address common questions such as “What is it like to have Alzheimer’s disease?” (Answer: like he’s looking at the world through his grandmother’s lace curtains) and his fears and concerns for an uncertain future. And while a piece that would have taken him 10 minutes to write pre-dementia often takes him 10 hours these days, the work helps Taylor better understand himself.

But it wasn’t until he shared one of his essays with a friend-also diagnosed with early Alzheimer’s-that Taylor realized that others with the disease shared his concerns, and he decided to take his essays mainstream. Since the book’s publication, Taylor has learned that he isn’t the only person with Alzheimer’s disease to conclude, after one too many failed attempts at buttoning his shirt correctly, that the shirt was “broken,” as described by his granddaughter in one essay. Nor is he the first to find that his mind has been full of “puddles” since the “tsunami of forgetfulness” cascaded through his brain. But Taylor might be the first to say it so eloquently.

He’s now a public advocate for the more than 5 million Americans diagnosed with Alzheimer’s disease. He speaks nationally on behalf of patient involvement in treatment decisions and edits a quarterly newsletter for people with early Alzheimer’s and their caregivers.

Having sat on the clinician’s side of the couch himself, Taylor doesn’t hold back in his plea for help from his former profession. He says he’d like to see psychologists get more involved in counseling and treating people with Alzheimer’s, especially in the disease’s early stages, and move away from viewing advanced patients as half empty.

“We’re always a whole person in our own minds,” Taylor says. “Psychologists should be supportive of people’s wholeness-their all-rightness.”

Is this the end of the beginning or the beginning of the end? Print version: page 25
Excerpt from an essay by Dr. Richard Taylor

“I am scared I am running out of usable time. Usable in the sense that I am using it now. I know I am not at the same level of general competency this January as I was last January. I am more dependent on others for assistance in performing the daily activities of living my current life. Clearly I could not keep this pace of activities without my spouse cleaning up behind me, reminding me to do this or that, asking if I wanted to do this or that. Taking care of me when I can’t, and helping me to take care of myself when I need help. Her patience is both generous and essential.

I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when or how the bad ones will come, except when I am very tired. Sometimes I am aware I am floundering and cannot seem to hold myself together. It is strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something and not have a clue as to what it was. Most dangerous for me are the moments I do not understand, but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is I do not know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and did not find out for three weeks. Can I do this? Of course! When I really did not understand what was being asked of me, and I just said “yes” for reasons that only Dr. Alzheimer knows.

Tie these all together; multiply them by 25 and you have an insight into my days. There is of course lots of time between the events, when I cruise along acting, and sometimes thinking like there is nothing wrong, until SPLASH-another glass of ice water in my face, compliments of Dr. Alzheimer.”

Don’t forget, if you haven’t already you can register here for Dr Al Powers Webinar ¬†Living with dementia: new perspectives¬†next week.

 

Editor: Kate Swaffer