Tag Archives: Dennis Frost

Living with Dennis and Dementia, by Tina

Today, as part of our blog series for Dementia Awareness Month, Tina Baker who is the care partner and wife of one of our members Dennis Frost shares with us what is is like, for her, living with Dennis, as well as living and supporting with Dennis, who is diagnosed with dementia.

Tina highlights the importance of not defining the person by the dementia or the disabilities casused by many symptoms of dementia, as well as some of her own challenges and highlights. Dennis also shared some of his musings with us recently.

Thank you Tina.

Living with Dennis and Dementia

By Tina Baker

Image source: Tina Baker

Dennis is for the most part pretty easy to deal with as he keeps himself busy, with projects, zoom meetings, which are on most days. He does side projects for each of these and when he is not doing these things he is out in his shed making fine detail for his model railway, or making items from wood, which he is very good at and has made several items of furniture around the house over the years

Time watching, Dennis will eat at the same time every day, and wants to go  to bed very early, and he wants me to go with him, he says he can’t sleep unless I do, unless I am away from home, but as I work shift work and some shifts I don’t finish until 8.00 pm and get home, shower it would be about 8.20 so when he says are you ready to go to bed at 8.30, of course I am not, no I say, 8.40 are you ready now? Ah still no, I have now taken on a bad habit of downing 2 glasses of red wine as fast as I can so when by the third time at 8.45 I am at least relaxed enough to go to bed, and hope that sleep will happen, especially if I am on a 6.00 am start. I wish I didn’t indulge him years ago with this then maybe it would not be an ingrained habit now.

One thing about Dennis is that his taste for food has changed and he really doesn’t like many foods he once liked, this has created a somewhat issue with what to cook, so now most dinners are now plain, although sometimes I just want to have something I want so I cook 2 different meals, but because I work shift work, I am able to cook the foods I want to eat, which works out well in this regard.  I do cook up meals that I know he likes and freeze them of in hope when I am on a late shift, that at least Dennis might eat well enough.

Dennis is very independent and so is able to look after himself in a capable way, he gets his own meals ready when I am working, he still bakes slices and muffins ect, he still drives … although since Covid this year that is limited, he can still converse on the phone.

Dementia and the after effects, this can be embarrassing at times …. It also can be a good thing. On the bad times occasions the few times that Dennis has lost his temper in a supermarket, throwing things, arguing with staff about, well anything, being threaten with the band forever… been better for a while on this”, on the good side, he has managed to get our phone bills reduced, he has argued with billers to give us a better deal, rate, he has saved us hundreds of dollars over the year/s ….

But I am his voice in the bad times; I explain why he is like this why change may make him angry … why he is not wearing a mask…. Covid has bought its on challenges …. But he Dennis has adapted to these, as long as the people don’t come on the attack…. Eg…. Do you have a mask sir … Dennis no …. Here is one you can wear…. No I have an exemption …. No problem sir ….  Instead of NO MASK NO ENTRY this will only bring on a Dennis Tantrum in my words .

What do I do for me?

Well, as it has been stated above I am still full timed employed, so my time is mostly taken up with work, but I love to walk and I am luckier  than most carers as I am able to do this … my down time from work and the daily grind, is to walk for km … around work shifts which take me to different locations … bush, the beautiful south coast, local and even the hills of Kiama.  I am also still able to go away overnight occasionally with friends to attend shows and events. I would never take this for granted, especially after reading about so many other carers, I just appreciate the time now, and hope to be prepared when the time comes for other situations

Support

Dennis has a great support team whether it is from his group of people with the disease around the world, his friends that he has locally or the extended people throughout the studies and groups he is involved in , as for me? If there is anytime I just need to vent then the Dementia cares group is a great way to do this, through this site I have learnt so much, especially on how to answer the questions that others will ask about Dementia.   As I am a health worker at a hospital, and where that hospital does have a ward just for people with Dementia, I am able to answer questions on behaviour, on how to deal and treat these people but using the experiences that I have had, I am able to tell people that Dementia is real but is nothing to fear, I am Dennis voice in many situations, but I am also the one that explains what I do know to the next generation. I have been given cards and advice over the years on where to find support if I ever do need it and as I do work in the hospital environment I think I can find a way to get support if needed, there are resources out there, and it’s just a way to find out how to access them.

Dennis has come so far with his knowledge and training in the Dementia world, he has been in many studies, involved in many ways different groups, I think his input will go on to teach many others, and I am just glad that I can be a small part in this, maybe someday there will be a cure, and everyone that is involved especially the input of the ones with Dementia  that have spoken out about their experiences will be the thing that has helped with this cure, they are should be proud of the part they have had with their voices and stories have helped so many and will help so many more because they were brave enough to speak out.  I may not like everything about this nasty disease but I do love knowing that the person I love so much may the voice that can change the world and its opinions about it …… and I have experienced so much,  because of it, I would never have thought about traveling to some of the locations I have been lucky enough to experience, I would not be as brave as I am now to speak up, to use my voice to help others understand, I would not be the person today if I did not meet Dennis, Dementia or not he has taught me so much .

Dementia is a disease but is it does not define us, those that have it and those that are close to it, but all stories connected can change the conception of it and eventually lead to a the Cure.

Tina Baker

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Register now for DAI’s May #DFC Webinar

“The Dementia-friendly Kiama Project: The Challenges & successes in improving the dementia-friendly features of a small community and their replicability to other communities”

 

  • Wednesday, May 23, 2018 (USA/CA/UK/EU)
  • Thursday, May 24, 2018 (AU/NZ/JP/SGP/TWN)

Presenters: 

Dr Lyn Phillipson: NHMRC-ARC Dementia Fellow, School of Health and Society | Faculty of Social Sciences and Australian Health Services Research Institute, University of Wollongong NSW 2522 Australia.

Dennis Frost: Chair Southern Dementia Advisory Group, Member Dementia Australia Dementia Friendly Communities Advisory Group & Dementia Advisory Committee

Nick Guggisberg: Manager Community & Cultural Development, Kiama Municipal Council.

Please note: this is one event, set in a number of different time zones.

You can read more about it on our website under DAI Webinars, or Register now on the Eventbrite page.

Webinar: The Dementia Friendly Kiama Community Pilot Project

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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 – 6.30 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 – but  – it 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 – 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

Dementia Friendly Kiama, by Dennis Frost

Dennis Frost is a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.

Dennis is from NSW and was a keynote speaker at the ADI20-16 conference in Budapest this year titled Dementia Friendly Kiama, which you can view here:

 

Please note: If you are watching this free video, and are employed or can afford to donate the fee you would have paid to attend on the day of $45 USD, please donate here – https://www.dementiaallianceinternational.org/donate/

DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a medically confirmed diagnosis of any type of dementia.

Join DAI here www.joindai.org

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