Dementia in Scotland - Dementia as a priority for Holyrood - Summer 2017 - Issue - Alzheimer Scotland
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Dementia in Scotland Summer 2017 – Issue 93 Dementia as a priority for Holyrood
2 Dementia in Scotland
Contents
p4
Communities around Scotland show
how a ‘tea and blether’ can counter
the stigma of dementia.
p4
Find out what people across Scotland got up to mark Dementia Awareness Week.
p5
Highlights and photos from
the Alzheimer Scotland Annual
Conference.
p4–7 p8
Some of our favourite stories from Dementia Awareness Find out more about the pioneering new project that
Week, featuring the friendships that make life better for seeks to improve the lives of people with dementia, with
people with dementia. the help of man’s best friend.
Welcome
Issue 93 – Summer 2017 3
Welcome!
This summer our attention is on Scottish awareness events and ‘Tea and Blether’
Government’s launch of the third fundraisers to help support people with We are pleased that
National Dementia Strategy, which was
published at the end of June. In this
dementia across Scotland. We are so
grateful to each and every person who dementia continues to be
issue we share our response to the key
areas of focus in this new strategy. We
participated. Our Annual Conference
finished off the awareness week,
a national priority and
also speak to the Scottish Dementia bringing together 650 delegates and we will continue to work
Working Group and National Dementia
Carers Action Network about what they
speakers to share their work, advice,
insights, research and experience. You
closely with the Scottish
think should be the key priorities for the can read the roundup of Dementia Government and all other
Scottish Government over the next three Awareness Week and the conference on
years. Maureen Watt, Minister for Mental pages 4 to 7. partners going forward, to
Health, talks about her commitment
to modernise dementia care, and the
Look out for a piece by Archie Noone,
Chair of the Scottish Dementia Working
ensure that people with
shadow health secretaries discuss the Group, on page 26 as he shares some dementia, those who care
challenges of ensuring that national of the activities and services that are
policy translates into better experiences only made possible by our amazing
for them and our wider
and improved quality of life at local supporters and the money that they membership have a strong
level. We are pleased that dementia
continues to be a national priority and
raise. I want to take this opportunity to
thank you all, we really couldn’t do this and influential voice in
we will continue to work closely with
the Scottish Government and all other
without you.
Finally, I am looking forward to our
these important decisions.
partners going forward, to ensure that Memory Walks season in September.
people with dementia, those who care These walks not only bring people
for them and our wider membership together to increase awareness but
have a strong and influential voice in they are vital in helping us to raise
these important decisions. the money we need to support people
Dementia Awareness Week ran from living with dementia right across
29 May – 4 June this year. As always, Scotland. There are 17 walks taking Henry Simmons,
it’s our busiest time of the year, with place across the country this year and Chief Executive
people all over the country running we hope to see you at your local walk. Alzheimer Scotland.
p16 p20 p22
Meet our new LGBT Champions Relative values: learn how Margaret Our top ten tips for helping you,
network, founded to serve the needs and Norman Duff don’t let dementia your family and your carer feel more
of the LGBT community. stop them from travelling. confident about eye care.
Dementia Awareness Week
4 Dementia in Scotland
Tea & Blether
To help mark Dementia Awareness
Week, hundreds of Tea & Blether
fundraisers took place across Scotland.
Tea, cake and conversations were had
in people’s living rooms, hospitals,
solicitors’ offices and beyond, as we all
got together for a good Tea & Blether
about dementia.
The aim of ‘Tea & Blether’ was to
get people telling personal stories
and sharing simple hints and tips with
friends, family and colleagues to help Patients and staff enjoying a Tea & Blether on Our Glasgow team celebrated the end of
them understand a bit more about Ward 17 at Woodend Hospital, Aberdeen. #DAW2017 at the Glasgow Gurdwara.
dementia. Through talking and sharing
more openly, we want people to feel
less awkward, embarrassed or uncertain
when they find out that their friend
has dementia.
One workplace which threw itself
headlong into the spirit of Dementia
Awareness Week was chartered surveyor
firm DM Hall. As part of their Charity
of the Year partnership with Alzheimer
Scotland, DM Hall staff organised Tea Therapet Bonnie steals the
show at Hairmyres Hospital in The West Highland Ramblers finish their four day
& Blether events in the office and
East Kilbride. fundraising trek for Alzheimer Scotland in Fort William.
some brave colleagues took part in the
Highland Fling Bungee event and Tough
Mudder. In total, the DM Hall team
raised £1,390 through their Dementia
Awareness Week fundraising.
Speaking about their office Tea &
Blether, Marianthi Markaki, Marketing
and Events Assistant, said “The team at
DM Hall greatly enjoyed getting behind
Dementia Awareness Week 2017 by
holding a Tea and Blether event for
colleagues. Many cakes were eaten and
much fun was had by all! Alzheimer Alzheimer Scotland Stranraer Resource Centre enjoy a Buddy the Dog meets bobbies on
Scotland is one of our charity partners Tea & Blether! the beat in Buchanan Street!
for 2017 and 2018 and we are delighted Right: Dementia
to have the opportunity to work Champion, Mairi, makes
together to raise funds and awareness the most of DAW 2017
for this important cause.” at Hairmyres Hospital.
Through talking and sharing more
openly, we want people to feel less
Tea & awkward or uncertain when they find
Blether out that their friend has dementia.
Annual conference
Issue 93 – Summer 2017 5
International insights; national
innovation; local inspiration
Annual conference 2017 round up
address this divide; the effects Brexit
On Friday 2 June, Alzheimer Scotland’s could have on dementia research
annual conference brought together within Scotland; and how we can
over 650 delegates at the world-class better understand the contradictory
Edinburgh International Conference messaging from the media about how
Centre, for an innovative programme you can prevent dementia. Over 60
with highly respected international, UK exhibitors and 50 poster presentations
and Scottish speakers. The conference were displayed on the day, each
explored the theme ‘International showcasing new research, practice
Insights; National Innovation; and products that can help people
Local Inspiration’. to live well with dementia, as well as
The conference included a multitude of parallel sessions that
presentations which challenged the explored equality, advanced dementia,
ever increasing gap between policy and the designing of younger
and practice and what we can all do to persons services.
“I always look forward to this
conference; well organised, lots of
great discussion and networking
and excellent presentations. As a
stall holder as well, I feel we get
value for money. Thanks!”
“Fantastic event,
buzzing with creativity
and collaboration”
“Excellent and great
opportunity to network
from colleagues local
national and international”
“A great selection of
speakers (including people
living with dementia) on
a variety of issues”
Geoff Huggins, Director of Health and Social Maureen Watt, Minister for Mental Health,
Care Integration, Scottish Government Scottish Government
Dementia Awareness Week
6 Dementia in Scotland
Friendship and dementia
F
rom 29 May – 4 June, thousands
of people across Scotland came
together for Dementia Awareness
Week in Scotland. Over the course of
seven days, communities united to raise
awareness about dementia and much-
needed funds for Alzheimer Scotland.
This year’s theme was all about
“friendship” and your stories, kindness
and enthusiasm made for a fantastic
week and has helped towards making
Scotland a better place for people with
dementia, their families and carers.
Here are just some of the
wonderful stories from Dementia
Awareness Week…
Willie and Rab (in their Black Watch regiment days)
Willie & Rab Willie said: “Being in the Army, a a Black Watch reunion this summer,
Willie Banks, 70, and Robert Wilkie, 67, lot of my friends from when I was in where Willie will meet up with more
met 50 years ago when they joined service are spread all over the country. army pals he hasn’t seen for many years.
the Black Watch regiment. Willie was It’s difficult to meet up, but we keep
diagnosed with vascular dementia back in touch by email and on the phone. Paul & Jim
in 2013, when he was 67. Although The friendships mean everything to “I met Jim on my first day at my new
they’d kept in touch with regular phone me. The friends I made in the Army are primary school. Jim had been in the
calls and emails reminiscing about their like family.” school for a while but it was my first
old army days, the pair hadn’t seen each Robert said: “It’s been good keeping day and there I was standing alone
other in person in over 40 years. Their in touch though and sharing old in the middle of the playground, not
story goes to show that friendships stories of our adventures. We were in knowing anyone and Jim just walked up
can still be maintained even if you Germany in the late 60s, then we were to me and asked if I wanted to play. So
don’t live nearby. A phone call or an in Malaya, Northern Ireland and Hong that was that and we were firm friends
email could be all it takes to brighten Kong so we’ve seen a fair bit of the from there on in.
someone’s day and keep them involved world together and have lots of stories “Our lives took different paths
in things. Willie and Rab were reunited to remember – like the time we went but Jim was always my anchor to my
at the Alzheimer Scotland Dumbarton AWOL together in Singapore. roots. Weddings, funerals, holidays and
allotment in celebration of Dementia “Being in the army and moving about birthdays – we were there together for
Awareness Week. a lot can mean that you lose your life’s big events and he’d always catch
roots a bit, but me up when I was back in town.
keeping in touch on “Then a few years ago Jim dropped
email and phone off the radar. Eventually we discovered
is a good way of that he’d been diagnosed with
staying connected dementia. After we learned this, we
even when you rediscovered our friendship, enjoying
can’t meet up.” walks and lunches.
Following “As time went on, Jim’s memory
their reunion to became worse: he talked in circles
mark Dementia and began to struggle with words.
Awareness Week, It became harder to enjoy our time
Willie and Rab will together. But then we started going
Willie and Rab (2017) both be attending to the Alzheimer Scotland allotment
Dementia Awareness Week
Issue 93 – Summer 2017 7
together. We were able to enjoy the Megan says: “Through the have this group of friends who know
fresh air and being busy in each introductions from Alzheimer Scotland exactly what my situation is.”
other’s company. my partner and I have gained a new Carol-Ann shares: “None of us know
“Of course the dementia got worse. circle of friends. These friendships are what the future will hold for our
Even in the later stages I visited Jim a great lifeline for both Stewart and husbands and we all know when the
every week. It was hard to see him like I. The Demi Girls are always there for time comes and sadly it will, we will
that but I’m glad my wife and I were each other during tough times or for be there to support each other, as
there for Jim and his wife. sharing information.” we do now.”
“One of the things I’ve learnt from Carol explains: “We’ve all been
this experience is that you can’t force brought into the group quite gradually. Dementia
Awareness
your friends to take you up on offers At first it is easy to get talking to the
of support, or make them tell you other carers because you have this
when something is wrong, but you huge big thing in common, but after Week 2017
can remind them that you are there a while you realise that you’ve got
for them whenever they decide that loads of other things in common too,
they need you.” outside being married to someone
with dementia.”
Survey findings
The “Demi Girls” Ray adds: “We meet for coffee or A survey conducted by Alzheimer
Meet the “Demi Girls”, so called lunch and drinks. More often than Scotland revealed that people
because they all care for partners living not we’re chatting away on Facebook living with dementia and their
with dementia. messenger where it’s really easy to let carers across Scotland are
Carol, Ray, Sheila, Megan, Carol-Ann the other girls know that you’re having experiencing significant loss of
and Grace met through the Alzheimer a bad day. They’ll all pile in with a friendships and social connections
Scotland Dementia Resource Centre sympathetic ear and advice.” and increasing isolation.
in Motherwell, where local Dementia Sheila says: “It doesn’t really matter In a poll of more than 500
Advisor Lorna Hart-Thomson plays a how close your existing friends are. participants, the ‘Friendship and
bit of a matchmaker to the people she Until you’ve gone through this I don’t Dementia’ survey found that:
supports, connecting people with peers think it is possible for anyone to really
she thinks they will hit it off with. understand. That’s why it is so good to • two out of three people
living with dementia have
lost friendships following
their diagnosis
• 60% of people living with
dementia feel reluctant to
attend social situations, such
as birthdays or weddings with
family and friends
• 91% of participants felt that the
public did not know enough
about dementia and what it is
like to live with the illness
During Dementia Awareness
Week we shared information and
stories to help raise awareness of
these issues and help the general
public to become more informed
and empowered if they discover
a friend has been diagnosed
with dementia.
Paul and Jim
Dementia dogs
8 Dementia in Scotland
Pawesome innovation
I
nnovation forms a common thread collaboration with the Scottish Prison
through Alzheimer Scotland’s Service and Paws for Progress to
approach, and strongly weaves into establish Scotland’s first prison-based
the Dementia Dog Project’s work to assistance dog training programme.
pioneer new services that enable Based at HMP Castle Huntly open
people to live well with dementia – all prison, where focus lies on job readiness,
with the help of man’s best friend. positive citizenship and rehabilitation,
A collaboration between Alzheimer this innovative partnership provides an
Scotland and Dogs for Good, the operational base and capacity boost
Dementia Dog Project represents the for the Dementia Dog team. It also
Dog Day community intervention
first project of its type in the world to enabled men in custody to develop
blend dementia specialist services with employability skills and build a non- Since January, five students have
the provision of assistance dogs. criminal identity to help reduce risks of completed their introductory course and
In 2012, an initial pilot based in future re-offending. gone on to help successfully train three
east Scotland successfully trained Participating students complete an dementia assistance dogs.
and placed three dementia assistance introductory dog training and welfare Paws for Progress are working
dogs with couples, helping maintain a course run by Paws for Progress, who with the University of Stirling to
structured home routine, being a social bring valuable experience of working monitor students’ overall rehabilitative
connector within the community and an with young offenders at HMP and YOI outcomes. In just a few months, the
emotional anchor for both the person Polmont to help train rescue dogs. students have already gained an
with dementia, and their carer. Students can then work with the impressive number of qualifications
The dogs can help remind someone on-site Dementia Dog Project team in topics such as Communications,
to take medication, regulate sleeping assisting with the training of dementia Numeracy, Working with Others, Animal
patterns, help them dress, increase assistance dogs. Care and Dementia Studies.
physical activity and boost confidence Henry Simmons, Chief Executive of Over the coming months, the
to enable the person with dementia to Alzheimer Scotland explains : “This is Dementia Dog Project will also be
live at home for longer with their carer. a wonderful example of collaborative taking their learnings beyond an
Last year, the project received a working to develop new and different individual assistance dog approach to
fantastic injection of funds from the Life types of supports for people living with develop ways to support more people
Changes Trust, enabling the training and dementia. As the number of people with dementia in broader community
placement of a further eight assistance developing dementia in Scotland settings, thanks to a recent National
dogs with couples in Scotland. increases, there is a clear and urgent Lottery grant from the Big Lottery Fund.
To help deliver this, the project need for creative and innovative The funding will allow the team to
recently announced an exciting solutions.” pilot a small-scale series of ‘Dog Day’
community events and goal-oriented
therapy intervention pilots in Scotland
and trial areas in England, using
trained dogs.
Peter Gorbing, CEO of Dogs for Good
welcomes the funding, “This grant will
allow the Dementia Dog Project team
to test and pioneer new approaches
to reduce social isolation and bring joy
and meaning into the lives of people
with dementia.” Watch this space!
More info
If you would like to donate or find out more
please contact bark@dementiadog.org
From left to right: Uno, Webb and Willow
News
Issue 93 – Summer 2017 9
Five things about dementia I learned in Japan
By Jan Beattie, Deputy Director of 1. Scotland is seen by the dementia
Workforce Development community in Japan as world leading
and way ahead of anywhere else. Our
The 32nd International Conference Human Rights approach; models of
of Alzheimer’s Disease International care; our activism on dementia are
was held this year in Kyoto, Japan, highly respected
and I was lucky enough to represent 2. In Japan dementia care is funded
Alzheimer Scotland. through state-run long-term
The conference brings together over care insurance that everyone
3,000 delegates, from over 100 countries, over 40 pays for
to learn about the latest research and 3. Group homes of up to nine people
innovations in dementia care. As I was are a popular option for people with
going all that way I wanted to see the dementia who can no longer live
best of dementia care and support that at home. Daily life centres around
Japan has to offer, so I set up some an open plan kitchen and living Kyoto group home preparing lunch
visits to local services. Here are some of space and people are supported to
the things I learned: maintain their skills and abilities;
shopping for food and contributing
to cooking meals, from chopping
vegetables to stirring pots or laying
out the chopsticks
4. Everything in Japan is polite,
thoughtful and well-ordered with a
powerful sense of duty adhered to
5. Dementia care, like everything, sits in
a cultural context: in Japan it is kind,
intricate and considered, with Hokkoi,
roughly translated as a deep sense
Miniature houses personalised in of wellbeing and contentment, the
a group home ultimate goal of dementia care Making a friend in the park
Scotland’s National Dementia
Champions: 700 and growing
Alzheimer Scotland has been proud disciplines to develop the skills and Scottish Government, NHS Education
to partner the University of West of knowledge needed to enhance the for Scotland, Scottish Social Services
Scotland in the delivery of the National understanding and practice of staff Council and the Alzheimer Scotland
Dementia Champions Programme supporting people with dementia. To Dementia Nurse Consultants to
since 2011. Funded by the Scottish date, participants have included nurses celebrate more than 100 new dementia
Government, the programme forms an from every area of hospital care, allied champions graduating at Murrayfield
important part of wider initiatives to health professionals, social services Stadium. This brings Scotland’s total
support improvements in the care and staff, the Scottish Ambulance Service to more than 700 dementia champions.
treatment of people with dementia and NHS 24, each of whom recognise The event also provided an opportunity
admitted (or at risk of admission) to a the need for collaboration across all to showcase the on-going work of the
general hospital setting. People with channels to improve the experience 600 who go before them.
dementia and family members are key of people with dementia in need The programme is, of course, only the
contributors to the teaching. of acute care. starting point to becoming a dementia
The programme brings together On 15 March 2017, we were champion and all continue their work of
professionals from a diverse range of delighted to join colleagues from change in their own workplaces.
Branch
section
News
10 Dementia in Scotland
30 Years of the Lewis and Harris Branch
T
his year the Alzheimer Scotland Lewis and Harris
Branch are celebrating their 30th anniversary!
This is an amazing achievement, but what’s even more
amazing is that four of the founding members are still very
much involved in our work today. Brenda Macleod has been
a committee member and volunteer since 1987 and was
previously branch secretary – for 25 years – before handing
the reigns over to Sonja MacLeod in 2013.
Brenda says: “We are very proud when we look back at all
the work we have done and are still doing to help people
living with dementia and their families in the islands.”
The branch is very active in supporting fundraising
and awareness raising as well as supporting projects
throughout the Western Isles. The branch also provide
regular volunteering support at the Solas day centre and Marion MacInnes, Service Manager added: “We’d like to pay
at community activities such as dementia cafés and peer our thanks to previous, long-term and new branch recruits for
support groups. their ongoing dedication and commitment to the work we do.”
Fair Isle Friday
The Makkin and Yakkin group, from There was a competition for the
Anderson High School in Lerwick, were ‘Most Imaginative Garment’ and the
keen to promote intergenerational ‘Prettiest Garment’ judged by members
work (and pick up some knitting of the group. Meg Smith selected a
tips!) so have been attending the pair of boots with Fair Isle cuffs as the
monthly Knit and Chat group at our ‘Most Imaginative’ and Frances Chapman
Shetland Branch. awarded the ‘Prettiest Garment’ prize to
The school hosted ‘Fair Isle Friday’ for a teacher, for his dazzling gansey.
the group where each student, member This was a wonderful example of
of staff and group member were invited generations coming together, linked by
to wear their favourite piece of Fair Isle an important part of our heritage and
clothing for the day. culture – knitting!
Moray Monday club
The Alzheimer Scotland Moray Branch
(formerly the Elgin Branch) has put
together a ‘Monday club’ which sees
almost 60 of its members head out
together on the last Monday of each
month, between April and September.
May’s Monday club enjoyed a visit
to see the seals along the shoreline
at Portgordon, before heading to
Garmouth hotel for a wonderful
afternoon tea.Dementia Strategy
Issue 93 – Summer 2017 11
Scotland’s national dementia strategy
I
n this edition GP surgery. This should help to make We recognise that delivering the
of Dementia in post-diagnostic support services more aspirations of this strategy will require
Scotland, I’m accessible and might also encourage local investment. The returns on this
delighted that we people to come forward earlier for investment for people with dementia
can share Scotland’s memory assessment or to seek and their families are immeasurable.
next national a diagnosis. The potential return for the system,
dementia strategy The Scottish Government has however, can be measured. It will be
with our supporters. also committed to testing Alzheimer seen in significant delays in admission
The new strategy, Scotland’s Advanced Dementia Practice to residential and other formal
launched earlier this summer, outlines Model; this takes us closer to achieving care services, being able to avoid
the Scottish Government’s priorities and our shared vision of the best possible unnecessary admission to hospitals
targets for dementia over the next three support for people living with dementia and preventing unhelpful crisis driven
years. Alzheimer Scotland welcomes from the point of diagnosis to the service responses; supporting and
this third national dementia strategy end of life. resourcing our local communities
for Scotland. We believe it shows a We believe that nobody should face to become the mainstay of support.
long-term commitment from Scottish Investing in and delivering this strategy
Government to improving the lives of is the only way to make this happen
people with dementia and those who We will only be able and it must become a key priority for
care for them.
In April 2013, the Scottish
to achieve a real every local area.
A decade has passed since dementia
Government made a guarantee to transformation for was first made a national priority in
provide a year of post-diagnostic
support, based on our 5 Pillar Model people with dementia Scotland and in that time we believe
that significant progress has been made.
of Post-Diagnostic Support. In this new
strategy, there is a commitment to go
and those who care for However, despite this progress much
more remains to be done. The gap
beyond a single year of post-diagnostic them by recognising between the policy commitments found
support. Individuals diagnosed at an
early point in the illness will now have
that we all have a in all three strategies and the real life
experience of many people is far too
a named Link Worker who will provide part to play in making wide. We will do all that we can to
ongoing support until their needs
change and they require greater care that change happen. work with local partners to deliver this
strategy and to make sure the collective
co-ordination. voice of people with dementia, their
We also welcome the commitment dementia alone, and we are pleased families, carers and our members are
to ensure that individuals diagnosed to see a significant commitment in as strong and as engaged as possible
at a later point, when they are likely to this strategy towards the support and throughout Scotland.
have more complex needs and require development of dementia friendly
support from a range of services and communities across Scotland. We Henry Simmons, Chief Executive
professionals, are able receive their will only be able to achieve a real Alzheimer Scotland.
post-diagnostic support through our transformation for people with
8 Pillar Model of Community Support. dementia and those who care for them
This would include their post-diagnostic by recognising that we all have a part
support being coordinated by a to play in making that change happen.
Dementia Practice Coordinator (DPC). The new strategy’s ongoing
The DPC would continue in that role commitment to Promoting Excellence
from the point of diagnosis through to and to the new Allied Health
the advanced stages of the illness. Professionals framework, “Connecting
The new national dementia strategy People, Connecting Support”, will add
also has a commitment to start testing depth to our practice base, as does
how post-diagnostic support could be the ongoing work to improve our Acute
delivered to people within a primary Hospitals, Specialist Dementia Units
care environment, for example at a local and Care Homes.Dementia
section Strategy
12 Dementia in Scotland
Government commitment to
modernise dementia care
In advance of the release of the national dementia strategy we spoke to a few of the key people involved in the
generation of the strategy – including the Minister for Mental Health, people with dementia and their carers – and
asked some key questions to the shadow health secretaries about their opinions on the challenges people with
dementia and their carers face in Scotland and what they think needs to be done to help implement this strategy.
Maureen our human-rights based approach –
Watt, Minister
for Mental
putting people at the heart of the Health and social care
care decisions that affect them.
Health, Scottish Health and social care integration integration allows us
Government. allows us to ensure that people’s care
needs are better anticipated, so fewer
to ensure that people’s
When I’m out people are admitted to hospital or care needs are better
on visits, or
speaking to
long-term care when they could be
supported in a homely environment.
anticipated, so fewer
people who work within Scotland’s NHS
and care system, the one thing that
Too often, older people, in people are admitted
particular, are admitted to
always makes me proud is their utter institutional care for long periods to hospital or long-
commitment – not only to the role but
also to caring for others.
when a package of assessment,
treatment, rehabilitation and support
term care when they
And, in terms of dementia, what in the community – and help for could be supported in a
I saw recently at the Alzheimer
Scotland conference were people who
their carers – could better serve
their needs. That’s why we’re putting
homely environment.
are passionate about improving the greater emphasis on supporting
lives of those living with or looking people in their own homes and Another important element is
after someone with dementia. That’s communities. access to information and support
something that is reflected in the We’re also continuing our focus on delivered by skilled link workers to
increased focus we have placed on diagnosis and post-diagnostic support build resilience for dementia carers,
the condition since coming into and want to make further progress in and benefit their own health and
government in 2007. ensuring more people are diagnosed – well-being.
We know the number of people and more quickly. It’s clear we are changing and
living with or newly diagnosed with the So, we’ll be testing the re-location modernising dementia care – but
condition is expected to grow and we of post-diagnostic services into it’s crucial that we maintain that
must plan for the future, which we are modern primary care settings so they momentum. Getting dementia care
doing. Key to that has been the extent become more accessible. That in turn right is a major challenge and we can’t
of our engagement with stakeholders will encourage more people to come do it alone. We need the help of our
who provide first hand or lived forward earlier for a dementia diagnosis partners, including Alzheimer Scotland,
experience of dementia and dementia or memory assessment. on every step of the journey.
care to help shape our approach.
The integration of health and social
care is helping us to change the way we
address dementia care, so more people
retain as much of their independence as
possible, for longer, as well as ensuring
that families and carers feel supported
in their key caring role.
And it’s why we are focusing our
action on dementia around three key
areas – reducing inappropriate use of
hospital services, shifting resources to
primary care, and supporting more care
in the community. All of this is part ofDementiasection
Strategy
Issue 93 – Summer 2017 13
Anas Sarwar Donald Cameron
Shadow Health Secretary, Shadow Health Secretary,
Labour Party Conservative and Unionist Party
What are the key challenges affecting people with What are the key challenges affecting people with
dementia, their families and carers that should dementia, their families and carers that should
be addressed in the upcoming strategy from the be addressed in the upcoming strategy from the
Scottish Government? Scottish Government?
With the latest figures showing that only 40 per cent The Scottish Conservatives have campaigned for Frank’s Law
of patients were even being referred for post-diagnostic to be introduced, as we believe free personal care should
support, the government has badly missed their target to be extended to people with dementia under the age of 65.
provide a year’s post diagnosis support for everyone. The We will continue to campaign for the Scottish Government
new strategy must address this. to include this in the upcoming dementia strategy. We also
People with dementia, their families and carers also need support the Scottish Government’s efforts to introduce post-
assurance that regardless of the age at which a person diagnostic support for every person diagnosed with dementia,
receives a diagnosis, they should receive the support they but are concerned by figures showing that currently only 2
require at no personal cost. I hope the new strategy signals out of 5 people diagnosed are offered the support.
a commitment to introduce Frank’s Law, and ultimately
move to the abolition of care charges altogether. Why do you think it has taken so long for these
The uncertainty of having to wait months for a care challenges to be addressed?
package to be put in place is also unfair and unjust and the The dementia strategy has been delayed, having been
government needs to commit to properly resource delivering originally due to be published in 2016. This has left
a care package within a week of assessment. commissioners, service providers, staff, patients and their
families with a lack of clarity over the direction of dementia
Why do you think it has taken so long for these support in Scotland. In my view, the Scottish Government
challenges to be addressed? has not yet addressed the issues related to an ageing
Scotland has an ageing population and we have seen a population, including dementia, and planned health and
significant increase in the number of people diagnosed social care services accordingly.
with dementia, with this number set to double over the
next 20 years. What do you think needs to happen for the Scottish
Despite this increasing demand on services, the Scottish Government’s strategy to be implemented?
Government have failed to ensure funding keeps up with The Scottish Government must ensure the resources and
demand. Local services budgets have been slashed by staffing are in place for their dementia strategy to be
£1.5bn since 2011. implemented properly. We support accompanying strategies
such as Health and Social Care Integration and Self-
What do you think needs to happen for the Scottish Directed Support but are worried by reports that neither
Government’s strategy to be implemented? are yet being fully implemented. Laudable aims are all very
The Scottish Government need to look again at the well, but they will fail to have an impact on the people
financing of the dementia strategy. The strategy needs to of Scotland if both public and staff are not engaged and
be bold and ambitious, but the funding needs to be in place services are not re-modelled in order to provide person-
to put such a strategy into practice. centred support to everyone who requires it.Dementia
section Strategy
14 Dementia in Scotland
Alex Cole-Hamilton Alison Johnstone
Shadow Health Secretary, Shadow Health Secretary,
Liberal Democrats Green Party
What are the key challenges affecting people with What are the key challenges affecting people with
dementia, their families and carers that should dementia, their families and carers that should
be addressed in the upcoming strategy from the be addressed in the upcoming strategy from the
Scottish Government? Scottish Government?
There are copious challenges when it comes to dealing with Too many people wait longer than they should for the post-
dementia. These challenges extend beyond the patient and diagnostic support they need. The way that diagnosis is
to the family and friends of the patient as well as the carers communicated to people could also be improved in many
for the patient. For me, the main challenge that needs to cases, and we should ensure it involves people’s carers and
be addressed is the need to improve dementia diagnostic families appropriately. There is a growing need for training
services and support. As well as diagnosis, there is need for for social care staff, including staff working in care homes
improvement for patients at all stages of the illness. and those supporting people living at home.
Why do you think it has taken so long for these Why do you think it has taken so long for these
challenges to be addressed? challenges to be addressed?
These challenges have taken an unnecessarily long time Timely post-diagnostic support requires well-trained
to be addressed. As with many government processes, the staff, who can work effectively with other health care
density of ideas and interests can hinder progress. In the professionals involved in earlier stages of assessment and
case of health care, balancing the budgets and capabilities diagnosis. I am not convinced that sufficient numbers
of local authorities with the abilities of the NHS can of link workers have been recruited, and recruitment and
prove difficult. retention challenges across the social care sector have an
impact on specialist training.
What do you think needs to happen for the Scottish
Government’s strategy to be implemented? What do you think needs to happen for the Scottish
The key to implementing the Scottish Government’s Government’s strategy to be implemented?
strategy is two-fold. Firstly, there is an urgent need to raise The strategy must be adequately resourced, and
public awareness and understanding regarding dementia. underpinned by robust long-term workforce planning.
The misconceptions that the public hold clearly prevents
the people from forming a consensus and demanding
change. Secondly, there is a strong need to engage in
cross-party cooperation to ensure that the treatment of
dementia patients improves. As well as the treatment of
these patients, it is essential that the Scottish Government
work to ensure the families and carers of the patients feel
supported. If we can raise public understanding and cross-
party support, I feel that real progress can be made to
improve the treatment of all of those impacted by dementia.Dementia Strategy
Issue 93 – Summer 2017 15
People with dementia and their carers
respond to the dementia strategy
Scottish Dementia National Dementia Carers Action Network (NDCAN)
Working Group (SDWG)
The bedrock of post-diagnostic available in areas of Scotland and
The SDWG are hopeful that their support (PDS), early diagnosis and waiting times for it can be long.
current campaigning priorities and their a ‘guaranteed’ link worker following NDCAN members share personal
input to the strategy’s development diagnosis established the foundation of experiences and frustrations when
will be reflected. SDWG members have the first national dementia strategy in they do not have access to this key
contributed by attending Dementia 2010. There are many examples where ‘guaranteed’ service provision. This
Dialogue sessions and taking part in this strategy commitment provides a absence impacts negatively on the
Expert Advisory Group meetings. SDWG positive impact on the day to day lived quality of life for all concerned. At the
were pleased to have been involved, experiences of carers. PDS, however, heart of this frustration is ‘inequality’.
and are confident that our participation remains an ongoing priority issue for Knowing that if this was available
will see commitments that reflect the NDCAN, a theme that is very often consistently, forward planning and
real lives of people with dementia. revisited at steering group, committee support would make a tremendous
“The post-diagnostic guarantee has meetings and wider network meetings. difference to the individual dementia
got to be looked at,” says member Why does this commitment remain pathway and ultimately save
Henry Rankin, noting that experiences a priority and create such passionate heartache and money.
amongst our members are inconsistent, discussion amongst our members? NDCAN’s continued focus is
particularly given their geographical When carer feedback demonstrates how not to forget this bedrock of the
spread across Scotland. Office-bearers effective and life changing this essential previous strategy. This is the time to
Archie Noone, Anne Macdonald and approach has been, it is really great to evaluate how firmly and well PDS,
Carol Hargreaves agree and are hear. Sadly despite this, statistics and the foundation of the first strategy is
optimistic that post-diagnostic support feedback demonstrate that quality post- established and focus on ensuring it is
in future can be delivered in a person- diagnostic support is not consistently available to all.
centred way, ensuring that the voices of
people with dementia themselves are
listened to throughout.
Most of all though, SDWG members
are looking forward to seeing
the commitments in the strategy
effectively put into practice where they
will have a positive impact on people’s
lives. Vice-Chair Carol Hargreaves is
pleased that SDWG’s involvement
should ensure it is “not just empty
words” but a meaningful step towards
ensuring that more people than ever
can live well with dementia.
More info
Think you could help shape the future
of dementia policy? Become an
Alzheimer Scotland member today at
www.alzscot.org/membershipsection
News
16 Dementia in Scotland
Caledonia Social Care
Launch of new employee owned social care provider
On Friday 30 June, staff members of CSC Margaret Paterson, Managing CSC provides a flexible and
hosted a celebratory coffee morning, in Director of CSC, commented “Employee personalised home support service
recognition of Employee Ownership Day. ownership is a dynamic business throughout central Scotland.
The event also marked their successful model, well suited to the care sector. It Locations include Falkirk, Stirling and
trading since April 2017 and to outline empowers everyone to develop and also Clackmannanshire, Lanarkshire, East
their ambitions for the first year. to work towards a sustainable future.” & West Dunbartonshire, Glasgow,
Renfrewshire, East Renfrewshire and
Argyll & Bute.
More info
If you would like to speak to someone
to learn more about the service CSC
provides, contact their head office on
03300 537 130, or visit their website at
www.caledoniasc.co.uk
Lesbian, Gay, Bisexual and Transgender
(LGBT) Champions Network
It has always been our aim to make parade last year, we realise that there to put in place training and information
sure nobody faces dementia alone, are many ways we could reach out to for our staff and volunteers to enhance
reaching out to everyone across the LGBT community and enhance our practice and engagement.
Scotland. To ensure we are meeting their experiences of working with us. The LGBT Champions Network
the needs of the LGBT community, The LGBT Champions will work is looking forward to helping our
we have decided to form an LGBT towards creating a culture of comfort organisation translate our learning into
Champions Network. The LGBT and safety for all staff, volunteers, truly inclusive practice and engaging
Champions hope to be role models in members, people living with dementia with those from the LGBT community
the organisation: championing positive and their carers; a culture where who are affected by dementia.
behaviours, attitudes, terminology and people feel they can be their true
challenging assumptions made about self, included by Alzheimer Scotland,
members of the LGBT community. free from discrimination and feeling More info
Building on our diversity work as an invisible. Working in partnerships
organisation and on three successful with other relevant organisations like For more information, please contact Fiona
Roberts or Jennifer Hall by emailing
years of being part of PRIDE in Stonewall, the Terrance Higgins Trust qwd@alzscot.org.
Glasgow, proudly being part of the and LGBT Health & Wellbeing we aimsection
News
Issue 93 – Summer 2017 17
Connecting People, Connecting Support
Allied Health Professionals
Alzheimer Scotland was commissioned AHP approach combines the ‘bio- vision for transformational change in
by Scottish Government, as a key psychosocial’ model with an integrated the way AHPs work with people living
commitment in Scotland’s second and co-ordinated approach to providing with dementia, now and over the next
dementia strategy, to develop an AHP interventions to people living three years. The actions will describe
evidence based policy document with dementia and focuses on five key how these changes will be integrated
outlining the contribution of the elements including; enhancing daily and implemented. Implementation of
Allied Health Professionals (AHPs) living, adapting everyday environments, ‘Connecting People, Connecting Support’
to integrated home care and across maximising psychological wellbeing, is a key commitment in Scotland’s
the care pathway. ‘Connecting people, maximising physical wellbeing and third dementia strategy, as outlined in
connecting support’ will be published supporting families and carers. Commitment 10:
in the next few months and will set out For each element, we offer a We will support the implementation
the rehabilitation skills and expertise definition, provide some key facts, of the new national AHP framework ‘
of the AHP workforce sharing how explain why it is important when working Connecting People, Connecting Support’.
they can have an even greater positive with people living with dementia, and Alzheimer Scotland will be supporting
impact on the lives, experiences define what will be delivered. They the implementation through the
and outcomes of people living with are described separately, but must be leadership from our National Alzheimer
dementia and their families. considered together within overall AHP- Scotland AHP Consultant, Elaine Hunter,
As well as written evidence led interventions to support individuals in partnership with a newly established
developed through research, and their families. national Alzheimer Scotland AHP
‘Connecting people, connecting support’ The AHP approach is applicable for all Dementia Forum. The forum involves
draws heavily on the evidence collected people with a diagnosis of dementia and AHP from throughout Scotland and
by people living with dementia and in all care settings; younger people living includes membership from eight AHP
their families, a scoping exercise on with dementia, people with rarer types professional bodies. The forum will have
post diagnostic support, an evaluation of dementia and those who may also be a national remit and, crucially, AHPs
of the impact of the AHP Consultant living with another long-term condition. will work with their local colleagues
role on the organisations in which they It is underpinned by principles of and people with dementia and their
work and literature reviews providing an human rights, person-centeredness, and families to lead the development
overview of available research into the collaborative and partnership working, and strengthening of partnerships for
effectiveness of AHP-led interventions and is informed by models of good delivery and co-design of local solutions.
for people living with dementia, their practice. The fundamental understanding AHPs in Scotland have made great
families and carers. All the evidence driving the approach is that people living progress in their practice in dementia
informing the policy document is with dementia can benefit from AHP- care, treatment and support, and can
available at www.alzscot.org/ahp. led interventions. The aim is to build on now build on these achievements.
The final document will present an the strengths of the AHP professions There is still much to be done, however,
evidence-informed case to support collectively; not by doing more, but to improve the way people can access
an approach to practice for all AHPs by supporting them to work in new AHPs’ rehabilitation skills and get the
working with people living with dementia integrated and innovative ways. right care, in the right place at the right
– what we call the AHP approach – Four underpinning principles and four time and the new policy ‘Connecting
with the intention of promoting local ambitions for all AHPs and AHP services people, connecting support’ will be
integration and implementation. The have been developed, with actions for instrumental in transforming the allied
change mapped health professions’ contribution to
against the nine supporting people living with dementia
‘National Health in Scotland over the next three years.
and Wellbeing
Outcomes’. The More info
underpinning
principles are the For further information on this work
foundations for please contact Elaine Hunter at
AHP practice and ehunter@alzscot.org or follow her on
twitter at @elaineahpmh, #AHPDementia
the ambitions and #ConnectingPeople
outline thesection
News
18 Dementia in Scotland
Dementia Friendly Lanarkshire
Dementia Friendly Lanarkshire is homes from across Lanarkshire. All
beginning to take shape, as the those who came along attended a
Dementia Friendly Communities Dementia Friends information session
movement catches momentum. We and pledged to become part of the
now have two new teams working wider Dementia Friendly Communities
across North and South Lanarkshire, movement. We are delighted with
in partnership with the local councils, progress so far and look forward
Health & Social Care Partnerships and to working in partnership with
other key stakeholders. communities across Lanarkshire to see
We’ve engaged with people living if we can indeed turn it purple!
with dementia and their families, as
well as local businesses and various More info
community groups, including: faith This has helped us focus our
groups, schools and universities, and priorities for the area and led to us to If anyone would like to find out more about
this initiative please contact:
local clubs to find out how we could hosting a Networking Business and
help to support everyone be part of Communities Breakfast during this Jane McArdle, Senior Community
Development Worker, South Lanarkshire
their community for as long as possible. year’s Dementia Awareness Week in
Tel 07717 730047
The key barriers identified in these Scotland. It was a huge success with
talks were: transport, the stigma around a variety of attendees from police, Alison MacNair, Senior Community
Development Worker, North Lanarkshire
dementia and the public having a better businesses, sheltered housing, retail, Tel 07717 728261
understanding of dementia. health care professionals and care
Occupational Therapy interns Dementia Circle
We continue to support our allied The main objectives of the interns Dementia Circle continues its mission
health professions internship and volunteers will be to promote of finding, testing and sharing some
programme over the summer in engagement in meaningful occupation of the new technology solutions on
partnership with Queen Margaret and also support SDWG & NDCAN the market that may help to make life
University and Santander Universities to meet their own key priorities. easier for people with dementia.
UK. This year our occupational therapy Throughout the intern programme Recently we reviewed remote
interns are Lindsay and Beth (job we will be active on social media so control plugs – good for those hard to
share) and Nicole. We also welcome follow us at: reach sockets down the back of the
our very first AHP volunteer, Emily. All Nicole @NicoleKane_OT TV; Canary – an unobtrusive system
four will be working together along Emily @McNEmilyJane that can monitor movement, heat and
with the Scottish Dementia Working Lynsey @LRFlanniganOT light levels in your home and alert to
Group and linking with National Beth @b_crocks anything unusual; and motion sensor
Dementia Carers Action Network. As #OTIntern #ConnectingPeople lighting – great for anyone who might
have trouble wayfinding in their home,
or who may worry about tripping over if
they get up at night.
More info
You can read our testers reviews and find
out more by visiting www.dementiacircle.org
or if you have any other questions relating
to using technology – anything with a
Networking at the conference (left to plug or batteries – you can contact the
right): Niamh (Alzheimer Scotland AHP PhD Technology Team on tec@alzscot.org
Lynsey in 2015 working with SDWG studentship), Emily, Beth, Nicole (in front)Around section
the world
Issue 93 – Summer 2017 19
The World Health Organization (WHO)
global plan on dementia
A
fter ten years of continuous Henry Simmons, Chief Executive
advocacy, The World Health
Organization (WHO) has adopted
of Alzheimer Scotland welcomed this
historic moment: “As a member of ADI,
We have a once-in-a
a global plan on dementia. It calls on Alzheimer Scotland has supported lifetime opportunity
governments to meet targets for the
advancement of dementia awareness,
this sustained drive for a global plan
calling on individual countries to
to dramatically
risk reduction, diagnosis, care and fund, implement and monitor national change the attitude
treatment, support for care partners and dementia plans of their own. Scotland
research. The plan was approved at the was one of the first countries to to dementia from
70th World Health Assembly in May.
Alzheimer Disease International (ADI)
develop a national strategy and since
2010 has developed two strategies
fear and inaction,
and people living with dementia were with a third published in June 2017. to fighting back,
consulted on the development of the
plan which includes, as an example,
While we still have much to achieve
in Scotland, the national dementia
understanding,
targets for all member states to strategies have been instrumental inclusion and support.
implement public awareness campaigns in supporting progress in increasing
and dementia friendly initiatives, and awareness of dementia and making
75% of all countries to develop training improvements in key areas such as
for care partners and families. diagnosis, post diagnostic support
Paola Barbarino, CEO of ADI, and acute hospital care. We warmly
said: “We have a once-in-a-lifetime welcome this new era of global More info
opportunity to dramatically change recognition, understanding and focus,
the attitude to dementia from fear and for what is undoubtedly the biggest Find out more about the plan and the other
member states supporting the plan at
inaction, to fighting back, understanding, generational health and social care www.alz.co.uk/dementia-plans/global-plan
inclusion and support.” challenge we face.”
Make sure
you can
hear us!
In the autumn edition of the magazine we’ll be in touch with you to
ask you to tick a box for us. The data protection law will be changing
in May 2018, so we’ll be asking you to put a tick a box to ensure that you
keep receiving our news, events and fundraising updates.
Keep an eye open for the tick.Relative
sectionvalues
20 Dementia in Scotland
Relative values
Norman Duff, originally from Ruchill,
was diagnosed with Alzheimer’s
disease three years ago, aged 82. We
spoke to his wife, Margaret, about
how they’re not letting his diagnosis
stop them from travelling.
Norman and I met when we were at
Kelvinside Senior Secondary School in
Glasgow – I was 14 and Norman was 16.
We have been married for almost 59
years now and have lived in Cardonald
for most of that time.
Norman was diagnosed about three
years ago and we got in touch with
Alzheimer Scotland quite quickly. We
have tried to stay to stay socially active
and part of our community as much Norman and Margaret with their family.
as possible, even if our regular outings
may have changed since his diagnosis. session given by Kevin Black (Dementia
On a Thursday morning, we head Advisor). It’s helped me build a great The groups we have
to the Memory Café at Ibrox Church.
It’s great to get across there and
network of people who are in the same
situation as me, who I can speak openly
attended through
have a chat, and there’s always a big about dementia to and who understand Alzheimer Scotland have
group of people who attend. Getting
out and about is particularly good in
my situation as a carer.
We like to get away when we can and
been great I’ve been able
the summer as we get to go to the have managed to fit in a few holidays in to meet other carers, and
allotment in Bellahouston Park that’s
open over the summer months. We
the past few years, both abroad to see
family and day trips across Scotland.
even went to a carers’
go to the allotment every Thursday We have three children, Caroline, Elaine information session
afternoon and get a chance to spend
some time outside in the garden as
and David; six grandchildren, Liz, Elaine,
Karen, Ian, Cori and Kirsten and two given by Kevin Black
well as chatting to other families and great grandchildren, Sofia and Felix, so
the Alzheimer Scotland staff. On Friday we’re not short of people to visit. confused when staying in an unfamiliar
morning we go to a singing group too, Before Norman’s diagnosis I went house, so staying with family, like when
we really do get about! away on the occasional weekend we went to visit our granddaughter
The groups we have attended through abroad alone, as Norman isn’t fond of Karen in the Netherlands is great as
Alzheimer Scotland have been great the sun. I am a painter, so I’d go to paint there’s always a familiar face around.
as I’ve been able to meet other carers, and knew he wouldn’t want to spend A year or two ago we managed to
and even went to a carers’ information the time alone while I did that. I haven’t get the whole family (13 of us) away at
had a chance to get away much to paint once and went on a cruise around the
since, but we have been going away Greek Islands together, it was beautiful,
We really are trying our together more, which is lovely. and there was so much to do. It was
best to keep getting out We have family in various places, the
Isle of Man, the Netherlands and even
especially great for me as I got to really
relax knowing that I had the rest of the
and about, both home have a grandson in Australia, so we visit family there to help. Norman did get
and away and are always when we can. I definitely worry about himself lost on the boat once, but we
going abroad since Norman’s diagnosis, found him quite quickly, and he was still
looking forward to the next although it’s usually absolutely fine in good spirits.
exciting thing on our list. once we’re there, it’s just the thought of When we’re not going abroad we
it. Norman can sometimes become a bit jump on the bus and head off on aYou can also read
