The final day of Dementia Awareness Month, #DAM2015 Day 30

Fabulous news Kate x

Image source: http://www.alz.co.uk/world-alzheimers-month Image source: http://www.alz.co.uk/world-alzheimers-month

Phew!!! It is almost over! I have been blogging twice a day for the whole of World Alzheimer’s Month / Dementia Awareness Month, #DAM2015, and am feeling vaguely jaded… I wonder why?! To say it has been a slog, is an understatement, and I have not been that well either, so it has definitely taken its toll. In fact, it is quite likely I will be quiet for at least a few days, as I have some very important things on my ‘To do list’, and also need to get well to do them.  But, to end this month of awareness raising, I wanted to end with a personal high.

I am proud to report that I was the winner of the Bethanie Education Medallion award, runner-up in the University of Wollongong, 2015 Alumni Award, Social Impact Category, the winner of the University of Wollongong, Community Engagement Award, a finalist in the Dignity Australia Achievement…

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Leaving on a Jet Plane

Start of journey from San Juan.
Start of journey from San Juan.
Safe arrival
Safe arrival
Home to whale research scientist in one of the best places to see Orcas - sadly not today though.
Home to whale research scientist Ken Balcomb
Blue Heron on Kelp
Blue Heron on Kelp
Watching take off from our plane (seats 10 people)
Watching take off from our plane (seats 10 people)
View from above
View from above

Well a sea-plane but doesn’t quite have the same ring to it. The Winston Churchill Memorial Trust actively encourage you to take sufficient downtime and to explore the local area so I had planned 2 kayaking trips (self-funded:) for the weekend. One of them involved travelling by sea-plane over to the San Juan Islands an archipelago of 172 named islands nestled between Washington State, USA and Vancouver Island, Canada.

I must admit I was a little nervous especially in light of the 2 very recent fatal accidents involving seaplanes and the fact that my brother-in law who is an aerospace electronics engineer wouldn’t go in one. What was more worrying for me once we were up in the air though was the fact there was a bee right next to the pilot and I was hoping he was not allergic to them!

Thankfully the journey was a breeze starting off by gliding along lake Union near to the houseboats ( where Sleepless in Seattle was filmed) for about 10 minutes before lift off. The flight itself was relatively short at about 45 minutes but the scenery was spectacular, flying over numerous islands with magnificent views of the mountains. We landed on the water at ‘Friday Harbour’ on San Juan island which was to be my base for the night. San Juan is one of only 4 islands (out of the 172) that are served by a ferry and what a beautiful place its main town Friday Harbour was. With a few hours to go until check-in time I wandered around the marina and then visited the Whale Museum which was fascinating particularly to learn about the local orca pods.

Throughout my travels I have been trying to use AirBnB wherever possible to minimise accommodation costs and have had some great experiences along the way. However the AirBnB at Friday Harbour was by the far though the best accommodation yet including the comfiest bed! Aptly named the ‘Churchill Suite’ although a little more expensive than what I’d budgeted for (nowhere is that cheap in Friday Harbour) there were some very thoughtful touches- organic lavender chocolate (harvested on island), lavender toiletries and a great selection of music- Woody Guthrie, John Denver & Bob Dylan. I watched the sobering film Blackfish, a reminder of why aquatic parks need to be closed or their format radically changed so that creatures including whales are no longer kept ( or bred in captivity).

Had a great day out kayaking with Sea-Quest along the Orca Highway although sadly we did not see any (they were around 2 days before) but the numerous birds and other wildlife more than made up for it- a bald eagle, belted kingfishers, rhinoceros auklets. Martine was a great guide and tandem paddle buddy.

My second kayak trip was back over by ferry to the mainland from Anacortes. This time I was in a single kayak and out with a guide and just one other participant. The weather was lot of breezier with choppy seas at times and some current testing my novice skills a little bit more. We circumnavigated around one island and I was thankful when we reached the calmer waters but heading back into the marina was a challenge and our trip was shortened due to the deteriorating weather. Beautiful nonetheless.

Then a 3.5 hour bus journey back to a hotel near Seattle airport and to attempt to dry out my kayak gear ready for an early start to San Francisco the next morning.

‘The bluest skies you’ve ever seen are in Seattle…..’

Water taxi from Downtown to West Seattle
Water taxi from Downtown to West Seattle
Intergenerational Music session.
Intergenerational Music session.
Childcare fully integrated into 'the Mount'.
Childcare fully integrated into ‘the Mount’.
The library at 'the Mount'
The library at ‘the Mount’
Entrance to 'The Mount' for families and 'wee' visitors.
Entrance to ‘The Mount’ for families and ‘wee’ visitors.

Well maybe not today as the morning has kicked off pretty cool, gray and drizzly or ‘dreich’ as it’s more affectionately known in Scotland. Still this doesn’t stop me as I commence a 40 minute brisk walk downtown to catch the 9am water-taxi over to West Seattle.

Mary Jane Knecht kindly agreed to meet me at the departure point to travel over the together to Mount Saint Vincent as coincidentally they have an Arts Engagement Activity going on today- part of the wider community engagement by Frye Art Museum.

I am off today to experience the Intergenerational Programme at Providence Mount St. Vincent or “the Mount” as it is known locally. The Mount is home to over 400 older adults providing 24-hour nursing care to the residents in the Skilled Nursing Neighbourhoods, Assisted Living apartments and Transitional Care Unit, a short-stay unit for patients who have just been discharged from hospital but still need nursing care and rehabilitation. The average age of residents is 92 years old.

The Intergenerational Learning Centre opened for business in 1991 and is a licensed child care centre located within Providence Mount St. Vincent and serves children aged from 6 weeks to 5 years- there are currently 125 children enrolled. It is open 5 days a week from 6am to 6pm and is open to the community as well as employers.

The residents and children interact within an umbrella of intergenerational programming with activities ranging from art, music, fun, exercise and recreational games to small group activities and engagement. There are 6 classes and each class has six scheduled weekly visits planned with a group of residents.

I was able to spend some time with Kathryn Anderson (Director of Clinical Services and fellow nurse) and Marie Hoover (Director of the Intergenerational Learning Centre) who spoke about the programme and the positive impact for residents, children, staff and the community. The success of the programme though has taken many years to get to where it is now and the advice given was to start off small and to ensure staff share values that complement the vision and  are committed to working across all spectrums of life.

Susan Clark kindly gave me a tour of “The Mount” and to show me the Intergenerational Programme in action which was a real joy to watch, particularly the music session. The programme is helping to normalise dementia and to hopefully break down the stereotypes and barriers that exist in society around dementia and ageing.

One of the intentions of the programme is to, ‘make from the beginning of life to the end of life the best years of life- to link that full circle’.

A film has been made called Present Perfect about the intergenerational project and is due to be finished by Summer 2016 and further information can be found at http://www.presentperfectfilm.com

Following my tour of the Mount I joined Mary Jane Knecht and colleagues who were facilitating an art session with volunteers and a small group of residents. One of the volunteers had been a nurse and lived over in Kyle of Lochalsh- small world. She told me that she had been matched with a resident who had also been a nurse and for many years worked night shift which helped explain her usual longstanding night -time activity. A great example of how knowing the person and understanding their life narrative and to see beyond the diagnosis of dementia can make all the difference and prevent labelling something as a problem.

Prior to catching the water taxi back over the bay I took a long walk in the rain back down and along the seafront towards Alki Beach. A usually bonny place I am told with wonderful views but sadly not today. Took the boat back over and had a last wander downtown on my last full day in Seattle.

I couldn’t resist revisiting Pike Place and I came across a great band busking- ‘Pretty Shady Stringband’ (slightly different line-up in link) who describe themselves as old time music by the people, for the people. A great finale from a wonderful city which I hope to visit again in the future.

Guest blog by Damian Murphy

Which me am I today?

Today I’ve invited Damian Murphy to write a blog – well it gives me a day off …………😊

Damian helps run our dementia forum in York with Emily Abbott – ‘Minds and Voices’. He spoke to me recently about the seeds of an idea for a blog on ‘Challenging behaviour by carers or loved ones of people with dementia’……..We often read about ‘Challenging behaviour’ displayed by people with dementia, well Damian’s blog has turned the tables and looks at it from the view of those with dementia and the challenges we may experience from the behaviour of loved ones………a very interesting perspective rarely written about……..

One sided or Lob sided – Dementia care is still way off balance.

From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of…

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Living alone with dementia, by Dr Judy Galvin #DAM2015 Day 27

Reposting a blog for Day 27 of Dementia Awareness Month 2015, #DAM2015 Day 27, on living alone, by a dear friend and colleague, Dr Judy Galvin… I wrote this when I first published it here:

[Again] Today I am publishing a guest blog, written by a woman I am honoured to know, and whom I often feel in awe of. Judy has given me permission to share her story of living alone with dementia of the Alzheimer’s type. My blog title uses the word dementia, as her story applies to anyone living alone with any type of dementia. There are a significant number of people with dementia living alone, and as she rightly says, currently they do not have much of a voice. The other group with no voice, are the children of people with younger onset dementia, like my sons. Hopefully, the advocacy of many around the world will…

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Right Here, Right Now

Seascape (with figures)
Seascape (with figures)

 

Hummingbird Swing
Hummingbird Swing

Downtown Seattle is a relatively compact city so I’m taking every opportunity to walk as much as I can. Not quite got the hang of the grid road system so lots of unintended detours along the way but getting to see parts of the city away from the main hustle and bustle.

A  1/2 hour stroll from Capitol Hill to downtown Seattle took me to my first meeting of the day with colleagues from the University of Washington- Medicine & Brain Wellness Centre including the Medical Director, Geriatrician Angela, Nurse Practitioner Elisabeth, Scientific writer Genevieve and Social Worker Andrew not forgetting Marigrace. We discussed the many differences between the British and American Health Care systems and surprisingly the many similarities and frustrations. Colleagues were interested to hear about the work taking place with regards to the national and local work in Scotland around the early identification and management of delirium- particularly the use of the 4AT tool which was unfamiliar to them.

Following this meeting I was able to spend a little extra time with Genevieve Wanucha who has recently started as the science writer for the wellness centre. In addition to her role at the University of Washington, Genevieve is currently working on a book about ‘Fronto-Temporal Dementia’ which is framed by both her research and personal experiences as her mother lived (and sadly died) with this condition. Genevieve spoke movingly about her mother and the challenges faced on a daily basis largely due to a lack of understanding about ‘Fronto-Temporal Dementia’ much of which is by healthcare professionals. I thank you Genevieve for sharing your mom’s story and the hope that, ‘maybe someday, we’ll all find ourselves able to help a person continue to belong’.

My next meeting was with MaryJane Knecht who works at the Frye Art Museum as the Manager of Adult Programmes. I was here to experience one of the ‘Creating Ageing Programmes’, ‘here:now’. Here:now is an ‘arts engagement programme for people living with dementia and their care partners to enjoy works of art and art making in a supportive setting’. It was established approximately 5 years ago with mentoring from the ‘Museum of Modern Art’ (MOMO) in New York who developed the original programme. Here:now consists of a weekly 2 hour session over a 6 week period. The group I was invited to join was meeting for the first session of the 6 week cycle.

The afternoon started with exploring the painting, ‘Seascape (with figures)’ 1899 by the Russian artist Nikolai Nikanorovich. The group was invited to study the painting and describe what they saw which resulted in a wonderful and rich discussion made all the more poignant by the contribution of a woman (and her daughter) who had been married to a fisherman and tragically lost both her husband and son to the sea. The wisdom spoke throughout the afternoon was humbling and once again it felt an honour to be part of the group.

The second part to the afternoon was then facilitated by Shanti (Sanskrit for peace) Sabersky and Adina Menashe from ‘Elderwise’ whose philosophy is based around spirit-centred care, seeing every day as a new opportunity for growth. Their mission is to ‘recognise and nurture the value and wholeness of older adults, regardless of their cognitive or physical ability, and to meet their need to experience life deeply in the present’. We were invited to paint our own seascapes using watercolours which were then shared with group members at the end and I was forced (but with much kindness and compassion) to face my own fear of painting in public and in a medium I was unfamiliar with. The space though felt safe for all and the final paintings were all fantastic and even mine didn’t look too bad in the end.

I had the opportunity to take a brief  self-guided walk around some of the gardens at the University of Seattle and the ‘Habitat Sculptures’ created by Fine Arts students to provide a friendly environment for wildlife. These included a raccoon picnic safe ground, bees hotel, stairway to treetop and my favourite, the hummingbird swing. A peaceful haven in the middle of the busy city.

What was a very full but fulfilling day was finished off with MaryJane and Marigrace’s company once again and that of fellow ambassadors of Seattle Momentia over dinner. It was great to spend the evening with like- minded people and I sincerely hope we can continue to stay connected and learn and grow with each other. Thanks once again.

 

 

 

 

 

 

 

 

 

Malignant Positioning and dementia #DAM2015 Day 22

Source: Steven Sabat Source: Steven Sabat

For Day 22 of Dementia Awareness Month 2015 #DAM2015, I am re-blogging a post written on Belledelettres’s Blog by a  friend in Scotland, who I had been online friends with and had the pleasure to meet in person in Edinburgh whilst over there this year. It is an important piece…

Professor Steven Sabat is one of the gurus (IMHO) in dementia care, and this image is from a power point presentation I found online when searching for an image to go with the blog below. You can download the presentation here Supporting or Undermining the Self-Esteem

Malignant Positioning vs Living Well with Dementia

Malignant positioning can occur when, after a diagnosis of dementia, a person’s words and behaviour are put down to symptoms of the condition, rather than being recognised as a genuine reaction to a situation. People may talk over and for people with dementia and take…

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Follow the Yellow Brick Road……

imageimage

With my first week over in Seattle also known  as the Emerald City

(due to the wonderful greenery throughout the city), it’s time to reflect on what has been a very busy but immensely enriching experience on both a professional and personal level.

My first meeting was with the wonderful Marigrace Becker, Programme Manager for Community Education & Impact at the University of Washington, Medicine and Brain Wellness Centre. MariGrace is behind the inception of Momentia Seattle, a wonderful movement whose mission is to (and I make no apologies of using their description on the website as it sums it up really well:)

‘transform what it means to live with dementia, to change the story from one of fear, despair and isolation to one of hope, growth, purpose and connection.

It celebrates the courage and strengths of people living with dementia and creates innovative opportunities for engagement in and with community. A story of living fully and boldly and finding joy in the moment’. Very much challenging the efforts of what Kate Swaffer describes as ‘prescribed disengagement’ upon diagnosis of dementia.

There are many different activities and opportunities on offer and I opted to spend some time at one of the biggest food banks in Seattle which distributes food to over 4,500 people in Seattle each day. “Remember the Hungry” is a monthly volunteer programme for people living with dementia who help out packaging and sorting food for distribution. People are welcome to come with partners, spouses, friends and family or just by themselves.

Charlie Reidy the co-facilitator of the programme introduced me to folks and encouraged me to spend time with each person taking it in turns with my partner to scoop rice into a bag or seal it up. What really struck me was the positive energy in the room, light conversations, laughter and sense of connectedness between all. I wasn’t the only one new on that day and everyone was so supportive and encouraging towards each other.

People volunteered to share their stories about their lived experience of  dementia and how the volunteer programme had given them meaning and the opportunity to give back to others. One gentleman told me about how the programme had given him the confidence to think about returning to work at the age of 74 years. A wonderful lady and her husband spoke about the joy and happiness they received from participating in such a programme and to live in the moment and not worry about where the dementia might lead them to.

The time with the programme ended all too quickly and saying my goodbyes I headed off to wander about downtown and take in some of the sites. Thought I was in San Francisco at times due to the steep gradient of some of the main roads down to the water- just as well Seattle seldom has snow or ice otherwise the city would grind to a halt!

Couldn’t resist visiting Pike Place Market and the world famous Pike Place Fish Company to witness the antics of staff and few flying fish! I remember many years ago NHS Highland held sessions on the FISH philosophy  which uses Pike Place Fishmongers as a great example to demonstrate how people can be energised and motivated at work regardless of what they do. Would be great to revisit this perhaps?

Looking forward to meeting up with the wider team from the University of Washington, Medicine and Brain Wellness centre, Frye Art Museum and Momentia Seattle Ambassor Team.

 

 

 

 

 

 

 

 

Any adults for “day” care? #DAM2015 Day 15

Source: googleimages.com Source: googleimages.com

It is Day 15 of Dementia Awareness Month 2015, and I feel that it is time we talked about the use of the term “Day” care or “Day” respite. Yes, I know it refers to an adult service, that does not include accommodation overnight, hence the rationale to use these terms, but as far as adults feeling like they are an appropriate place to go, is a totally different bucket of fish! But the picture to the left, of a day care centre for children, is the first image that springs to mind, for most of us.

For some time now, I have been in conversations with others living with dementia discussing whether the use of “day” care/respite is appropriate for adults requiring support. Most of us have said, we will refuse to go if it is called “day care” as that is the place we took our…

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