MAGAZINE - Together We Will Defeat Dementia - Going Dutch: The Future of Dementia Care? - BRACE Alzheimer's Research
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AUTUMN 2021
MAGAZINE
Going Dutch:
The Future of
Dementia Care?
Together We Will Defeat Dementia
www.alzheimers-brace.org
One
Jayne Connery, from Care Campaign for
the Vulnerable, took on a dare devil
feat this summer to raise funds for
Ritchie Berries, a
of a Kind
dementia research.
personal trainer from
She bravely descended 162 Staffordshire, has been
busy this year setting
Fun-draisers
metres down The British
Airways i360 in Brighton, the himself a range of
highest possible descent in challenges to help
Going Dutch: The Future of Dementia Care? the whole of the UK. Jayne
clearly has nerves of steel;
she has also skydived for
BRACE has so many wonderful people
supporting the charity that are
raise funds for dementia research.
One of his challenges involved
dressing up as Mike Wazowski from
In the early 1990’s, staff at a traditional nursing home in the BRACE in recent years too! the children’s film ‘Monster Inc’
really going above and beyond and running a virtual marathon,
Netherlands started discussing how they would like their parents Her courageous efforts raised for dementia research. which brought a lot of smiles to the
to be cared for if they had dementia. What would we want for almost £1800 for BRACE and we
really can not thank her enough.
Here are just a few many people he saw along the way.
our mums and dads? How can the residents we care for have a of our amazing Ritchie has raised more than £700 for
better quality of life? fundraisers… dementia research this year, thank you so
much for your dedication. What a star!
After much thought and careful also hold a range of occupations in
consideration, they decided their the village, such as shop attendants
care home should be centered on or post office workers. This allows
the idea of ‘normal small scale living dementia specialists to offer support
for people with dementia.’ The and care to the residents, when
opportunity for residents to live in a needed, wherever they are in the
small, familiar setting, with norms village and enables the residents
and values that the residents were to live as close to a normal life as
familiar with. A home away from possible.
the family home, but a happy home,
nonetheless. Family and friends are welcome to
visit their loved ones in the same
This led to a unique one-of-a-kind manner as someone would visit a care
Kerry Ashenden from Northamptonshire, used to be a
dementia village, ‘Hogeweyk,’ being home, stop by their parent’s house or
carer for people with dementia. She started raising David Greenfield from Bolton sadly lost his mother-in-law
designed to be as accessible as meet in a restaurant for lunch.
awareness and fundraising after watching a very close to Covid-19 in April 2020 and, as she had also been living
possible for its residents. The village
Whilst life in Hogeweyk focuses neighbour try and fight the disease. She also watched with dementia, he wanted to do something in her memory
was opened in 2009 and is based in the family suffer and saw how the disease affected
on allowing residents to live to raise money for a dementia cause.
the small town of Wheesp just outside them, how they lost their loved one even before he
of Amsterdam. independently with dementia, At the start of the very first lockdown in 2020, David
had lost his fight. She says “People don’t realise the
the village is self-contained away decided to grow a beard which of course, made him look
impact this disease has on the individual and their
Hogeweyk is home to 152 people living from the wider world with 24-hour like Santa at Christmas to the delight of his foster children.
family. It’s heart-breaking. Cancer is seen as the
with the later stages of dementia surveillance to ensure that residents,
number one killer. Alzheimer’s and Dementia is a killer, As David’s beard grew longer, he saw it as perfect
and offers residents a high level of especially those prone to wander, are
people need to be made aware of it” opportunity to support BRACE with a sponsored beard
independence and the freedom to always kept safe.
Kerry is a cake maker and organised two raffles to win shave. After 14 months of lustrous hair growth, David
lead a normal and active life. The
To learn more about this amazing her lovely cakes and raised over £300 in ticket sales. shaved off his beard on 21st June 2021. His freshly shaven
village has lots of amenities such
village, please join Hogewyk She is also generously planning to do two more, one in look raised more than £200 for dementia research!
as a post office, shop, hairdressers,
theatre, a bar and offers residents 25 founder Eloy van Hal, at this year’s September and one at Christmas. Thank you for your Many thanks to David (and his wife Denise for putting up
clubs to join and take part in. 2021 online Together 4 Dementia support Kerry - it is really appreciated. with the beard for so long) and all who sponsored him.
conference, on the 2nd November.
Residents are cared for by 250 full and
For full information and to book
part-time nurses and specialists who
tickets to the conference please
We would love to have you onboard team BRACE!
spend time in different parts of the
village throughout the day. The staff visit: www.alzheimers-brace.org/ If you would like to get involved with fundraising, please email
event/together4dementia-2021/ Nikola on communications@alzheimers-brace.org or Jeanne on jeanne@alzheimers-brace.org
2 | BRACE www.alzheimers-brace.org call the BRACE charity office on 0117 414 4831 AUTUMN 2021 | 3
What You
Helped us
Achieve
How to Get a in 2020
Good Night’s Sleep
– and Reduce your
Risk of Dementia
We now recognise that up to a third of dementia Unfortunately, despite being able to The start of the COVID pandemic posed a huge threat to many charities, including BRACE.
cases could be prevented through health fall asleep in a timely manner, many
older people get woken up through
It forced the cancellation of all our fundraising events and public meetings, including the
and lifestyle modifications. This has caused
a shift in our approach to dementia – it is no the night by the need to pass biggest dementia information event we had ever attempted.
longer accepted as an inevitable consequence urine. This mainly affects men due to a common
condition called benign prostatic hyperplasia (BPH). In We consequently experienced a huge Our running costs as a proportion of We couldn’t have managed
of growing old. An area of great interest in drop in income and had to act to save income were higher than normal but, any of this without our
addition to limiting fluid intake before falling asleep,
dementia prevention is sleep. Poor sleep in mid- speak to your GP if you think you have BPH – there are the charity and the research that we in a year when weathering the storm brilliant supporters and are
to-late life has been associated with increased several treatment options. hope to fund in the years ahead. was the priority, we feel that this was grateful for all that you did
dementia risk. more than respectable. and continue to do.
Sleep disruption also occurs from disordered breathing Through hard work by trustees and
So, what can you do to sleep better? There is no ‘one during sleep, including a common yet underdiagnosed staff, combined with the generosity
size fits all’ approach, sleep is a deeply individual condition called obstructive sleep apnoea (OSA). and sometimes the ingenuity of our Income Expenditure
experience. Nonetheless, some basic changes can help OSA is strongly associated with dementia risk. Tell- supporters, we fought back. We also
everybody sleep better. tale signs of OSA are loud snoring, sudden pauses in had the good fortune in December to
breathing overnight, and daytime sleepiness. OSA receive the largest ever legacy (gift in
First, help your brain unwind in the evening. Make disproportionately affects overweight people, and one a will) that the charity had ever had,
your bedroom a relaxing space free of mental of the most effective treatments for OSA is weight pushing total income from legacies for
invasions, like televisions, smartphones, light, and loss. Again, see your GP if you think you might have the year to £430,720.
noise. If you are struggling with noise and light, get this condition; there are treatment options beyond
thick curtains and earplugs. Engage in a relaxing weight loss. This meant that BRACE was able to £714,115 £576,715
activity before bed, like reading, listening to the fund two new research projects, one
radio, or taking a bath. Avoiding caffeine 4-6 hours Sleep is essential for brain health, yet it is often in Exeter and one in Bristol, which had
before bed will also help your brain switch off. marginalised in our busy, modern world. The good been put on hold since the spring. The
Although alcohol can help some people unwind it news is that small changes in sleep hygiene can make trustees had already managed to fund
impairs sleep quality, so avoid alcohol in the evening a big difference. another year’s support for the South
if you want better sleep. On this note, also avoid the West Dementia Brain Bank and a part
temptation of sleeping pills – they will damage your Dr Sebastian Green is involved with research at the time post for the ReMemBr Group.
sleep quality. National Institute for Health Research and also with Gifts & donations Cost of raising funds
the ReMemBr Group. At the end of the year, with the
My second recommendation would be to set a sleep charity’s financial position more Legacies Charitable activities
schedule. This helps your brain and body get used Sebastian’s current research interest is the role secure and some new re-search
Community fundraising
to the amount of sleep you need, which is normally of sleep in dementia, and he is investigating how funding in place, we felt that we
between 7-8 hours. Safeguard and prioritise your sleep sleep-measuring wearable technology could be used were again making a difference in the Investments
time and aim to wake at the same time every day, to predict future risk of Alzheimer’s disease. battle against dementia.
even if it’s the weekend.
4 | BRACE www.alzheimers-brace.org call the BRACE charity office on 0117 414 4831 AUTUMN 2021 | 5
When Decisions Become Difficult:
Dementia and Mental Capacity
For people living with dementia there may Mental Capacity Assessment The second stage of the test,
sometimes called the functional test,
The threshold of understanding What this means is we have to identify
whether a decision is ‘macro’ or on-
come a time when making decisions become If a person with dementia needs
to have a Mental Capacity
dictates that the person is unable to
make a decision if they cannot:
The threshold of understanding is,
what a person needs to understand
going (in which case the person needs
to retain information for longer) or
increasingly difficult and a person’s mental Assessment, it will involve a
• understand relevant information
to make a specific decision. So for whether the decision is ‘micro’ or one-
2-stage test and the professional example, what a person needs to off (in which case they only need to
capacity needs to be assessed. making the assessment will be
about the decision to be made;
understand to decide where to live - is retain the information at that specific
looking for a range of indicators • retain that relevant information in very different to what they need to moment).
about their decision-making their mind; understand to make a Will.
This may happen if: Mental Capacity is really just another
ability. Someone living with dementia may
way of saying a person’s ability to make • use or weigh up the relevant
• the person’s behaviour or Caselaw tells us is it is really have the capacity to decide what they
a decision. It is important that we don’t information as part of the decision
circumstances are making those The first stage asks 2 questions; important that we don’t set the would like to wear or what they would
confuse it with other concepts such process; or
around them doubt whether the threshold too high or too low. As like to eat for lunch, but they may
as vulnerability or mental ill health 1. Is there an impairment of, or
person has capacity to make decisions • communicate their decision. a guide we set the threshold of struggle with managing their finances
because whilst there may be some disturbance in the functioning
understanding at the level that we which involves ongoing and long-term
• a social worker, GP or other cross-over between them, it is possible of, the person’s mind or brain?
If a person lacks capacity in any one would expect the ‘average person decision making.
professional may have doubts about to lack capacity and not be vulnerable 2. Is the impairment or of these areas, this represents a lack on the Clapham omnibus’ to know
the person’s ability to make decisions or suffering from mental ill-health and disturbance sufficient that the of capacity (Mental Capacity Act 2005: and understand. As you might expect If you are concerned about a loved
vice-versa. person lacks the capacity to Code of Practice). this often sets understanding lower ones’ ability to make decisions, please
• the person has previously been unable
to make a decision for themselves. make the decision in question? than you might think – imagine how speak to their GP, social worker, or
What is the Mental Capacity Act? The key here is that the information much thought the average 18-year-old care providers.
By assessing mental capacity, it ensures This stage is sometimes called ‘the we are expecting the person to gives to their use of social media for
the person living with dementia can The Mental Capacity Act was passed diagnostic stage’, which I believe understand, retain, weigh up and example! Tim Farmer is the Founder of TSF
be protected from potential harm and by parliament in 2005 and came into is misleading. We are not looking use must be relevant. This is why the Consultants, Mental Capacity Assessors
if necessary, support put in place for force in 2008. It established 5 core for a diagnosis, rather evidence of mini mental state test (can you count Capacity is time specific - https://tsfconsultants.co.uk/
decisions be made on their behalf. These principles and provided a more formal an ‘impairment or disturbance’. backwards from 100 in 7’s? What’s the
decisions can range from significant ones framework for professionals to assess It is important to remember that name of the prime minister?) is not The final thing to be aware of is that He is a trained mental health nurse
such as writing a Will or where to live, mental capacity. These principles are: diagnosis follow symptoms and so considered to be a test for mental mental capacity is time specific. The with over 25 years of experience of
to day-to-day decision such as what to the presumption of capacity, supported it is the symptoms or presentation capacity. I don’t know a single decision Act tells us that a person only has to working with adults and children with
wear or what to eat. decision making, unwise decisions, best of the individual we are looking for where being able to count back from retain information for the length of reduced mental capacity, and he has
interests and less restrictive options. rather than the label/diagnosis. 100 in 7’s is relevant. This is often the decision process. The question completed in excess of 3,500 mental
called the threshold of understanding. is, how long is the decision-making capacity tests.
process?
6 | BRACE www.alzheimers-brace.org call the BRACE charity office on 0117 414 4831 AUTUMN 2021 | 7
Competition Time
Thank you, TREES Entry is £5.00 –
Stephen
closing date Friday 31 December 2021
Fill in the missing letters to test your knowledge
Please send your answers together with a
of Trees! cheque for £5.00 payable to BRACE to:
The BRACE Charity Office,
In June 2021, Professor Stephen 1 D _ u _ l _ s _ i _ (2 words) The Brain Centre,
Southmead Hospital,
Lisney retired as a Trustee of 2 C _ a _ a _ p _ e (2 words) Bristol BS10 5NB.
BRACE after serving the charity
3 J _ n _ p _ r The winner will be contacted within 2 weeks of
for twelve years. the competition closing and the winner’s details
4 A _ d _ r will be announced in the next magazine. The
answers will also be published.
A neuroscientist and former Dean of Medicine at the Stephen is succeeded by Jane Dare as Chair and leaves a 5 W _ l _ o _
University of Bristol, Stephen brought immense depth charity much strengthened in its role supporting medical The winning entry will receive a £30 gift voucher
of knowledge to the charity’s work. He became Chair of research. 6 C _ d _ r of their choice. The editor’s decision is final.
Trustees in 2017 and his calm and astute approach made
him the ideal leader for BRACE through the turbulence of We would like to thank Stephen for all his work 7 H _ z _ l
recent years. The charity benefitted hugely from Stephen’s
Thank you for your support!
and for being a friend and mentor to those 8 C _ p _ e _ b _ e _ h (2 words)
ability to turn complex science into understandable
concepts that motivated people to support us.
around him.
9 N _ r _ a _ s _ r _ c _ (2 words)
NAME:
10 H _ r _ e _ h _ s _ n _ t (2 words)
11 S _ o _ s _ i _ e (2 words) ADDRESS:
John Matthews 12 S _ e _ t _ h _ s _ n _ t (2 words)
We were sad to hear during 13 Y _ w
August of the death of John
14 C _ m _ o _ l _ m _ (2 words)
Matthews. John was Assistant
Treasurer at BRACE for many 15 S _ l _ e _ b _ r _ h (2 words)
years. With his wife, Sonia,
he was also a regular 16 E _ g _ i _ h _ l _ (2 words)
volunteer, especially at the 17 H _ l _ y
annual Autumn fair.
18 S _ c _ m _ r _ POST CODE:
Terry Moore 19 B _ a _ k _ h _ r _
CONTACT NUMBER(S):
20 E _ g _ i _ h _ a _ (2 words)
Terry also sadly passed away
In Memory of Dr Judy Haworth in August. He was a long-term
supporter of BRACE and was
21 H _ w _ h _ r _
We are sad to inform you of the death of Dr Judy Haworth, known 22 A _ p _ e
a much-valued member of
to BRACE supporters for many years, after a long illness. our volunteer team, regularly 23 C _ m _ o _ b _ e _ h (2 words) Spring 2021’s quiz winner
helping at supermarket lives in South Gloucestershire
Judy was a dementia specialist doctor in the former BRACE Centre at Blackberry 24 W _ l _ u _
Hill and Frenchay Hospital, and then in the Bristol Brain Centre at Southmead collections. and chose a £30 Amazon
Hospital, working initially with Professor Gordon Wilcock and later as part of Dr 25 E _ c _ l _ p _ u _ voucher as a prize
Liz Coulthard’s team. She became ill shortly after her retirement in 2018. We remember them fondly,
especially for their humour
We will remember her as a gifted clinician, passionate about the care of her and good cheer at fundraising SPRING 2021 The answers to the Keyworkers Quiz were:
patients, and as a compelling speaker at BRACE Conferences and other public events, and are grateful for 1. Doctor 2. Vicar 3. Policeman 4. Journalist 5. Ambulance Driver 6. Nurse 7. Refuse Collector 8. Postal Worker
meetings. Judy was also a warm and lively companion to those of lucky enough to
their commitment to the charity. 9. Veterinarian 10. Firefighter 11. Teacher 12. Care Worker 13. Armed Forces 14. Food Retailer 15. Paramedic
have been able to work with her.
16. Broadcaster 17. Social Worker 18. Cleaner 19. Delivery Driver 20. Street Cleaner
8 | BRACE www.alzheimers-brace.org call the BRACE charity office on 0117 414 4831 AUTUMN 2021 | 9
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10 | BRACE www.alzheimers-brace.org call the BRACE charity office on 0117 414 4831 AUTUMN 2021 | 11
Bath Half 2022
Sunday 13th March
10 am – 3 pm
Keen runners wanted!
Apply for your FREE race place
on the BRACE website
List of Events
Please visit www.alzheimers-brace.org/events for more information and to sign up to challenge events.
SEPTEMBER 2020 NOVEMBER 2021
Wednesday 22 September Dementia: Reduce Your Risk Tuesday 2 November Together 4 Dementia 2021
2 pm – 3 pm Online Event 10.45 am – 3 pm ONLINE CONFERENCE
OCTOBER 2021 Thursday 18 November Older People’s Mental Health
2 pm - 3 pm ONLINE EVENT
London Marathon
Sunday 3 October all day
(both virtual and ‘in person’)
DECEMBER 2021
Tuesday 12 October Dealing with Difficult Behaviours BRACE Carol Service,
Sunday 12 December
2 pm - 3 pm ONLINE EVENT St John the Baptist Parish Church,
3 pm – 4.30 pm
Frenchay Common, BS16 1NB
Wednesday 13 October Lunch with BBC’s Emma Britton
CANCELLED CANCELLED Friday 10 December Sieko Magic Show
7.30 pm – 8.30 pm ONLINE EVENT
Saturday 16 October Autumn Fair,
10 am – 1 pm Red Maids High School, Bristol MARCH 2022
Tuesday 19 October Caring for the Carers Sunday 13 March
Bath Half Marathon 2022
3 pm - 4 pm ONLINE EVENT 10 am – 3 pm
12 | BRACE www.alzheimers-brace.org
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