Behaviour Change Ahead? – Hearing

The hearing of a person living with Dementia can impact their activities of daily living and give a negative perception surrounding their responses, even leading to them being labelled as having behaviours and aggression.

Although the symptoms of dementia usually involve losses of various kinds, it is very important to remember that the person who has dementia does not get ‘lost’.

We are still there, trying to understand things, trying to keep in touch with other people and do things which are important to them.

We still have feelings, likes and dislikes and hopes for the future.

Hearing Loss

There is a strong link between hearing loss and dementia. According to one study, people with mild hearing loss are two times as likely to develop dementia, and this increases to three times for those with moderate hearing loss (Lin et al 2011).

The reasons for this relationship are not clear, but communication difficulties may be one reason, as both hearing loss and dementia can make communication more difficult.

It is essential to recognise and respond sensitively to hearing loss in people with dementia. If a person with dementia is unable to communicate problems we are having with their hearing, this is likely to cause distress.

We may well be frustrated or aggressive, but unable to say why – and these reactions then may be interpreted as being a result of the dementia.

Both identification and management of hearing loss are particularly important where a person has dementia. Without this, the dementia may appear worse or get worse.

For example, if a person with dementia is having difficulty using their hearing aid – say we don’t remember to use it or don’t recognise it as their hearing aid – this is likely to make it harder for them to follow communication and may make them seem more confused and withdrawn.

Both hearing loss and dementia can cause social isolation.

Where someone is experiencing both of these, this can be compounded. For example, the person may be unwilling to attend social functions or participate in activities because their problems with hearing and memory make social situations so much more uncomfortable.

Hearing loss can lead to poor communication and the person to appear confused.

We may be unable to answer questions and make choices leading to frustration.

We may not be able to understand instructions or appear to ignore someone.

We may react suddenly when someone approaches because we didn’t hear them come into the room.


Tinnitus

Tinnitus is the name given to a condition where a person hears sound which is not coming from outside the ears.

This sound may resemble ringing, buzzing or whistling.

In some cases it can sound like music or voices.

The sounds may be present all the time or we may stop and start.


Noise and Hyperacusis

Noise can have a negative effect on a person living with Dementia as well.

We may appear confused, lost, disorientated.

We may lose our ability to focus on a conversation especially if there is a lot of background noise or we are talking to more than one person.

We may sit with the TV volume low.

We may have headaches due to noisy environments.

Again, these things can lead us to be labelled with behaviours and aggression.

Noise is an issue for myself and I recently had a hearing test for Hyperacusis



Modelling Dementia Conference

I was invited by Adelina Comas Herra to attend the Modelling Dementia Conference at the Lincoln Centre in London.

The conference was a final showcase of the work of the MODEM Project.

Their team of researchers is led by the London School of Economics and Political Science, in partnership with the Universities of Newcastle, Southampton and Sussex and the International Longevity Centre UK.

The project combines the expertise of researchers in simulation modelling, social gerontology, health and social care economics, clinical evaluations, qualitative methods and knowledge exchange.

“As the UK population continues to age, the number of people with dementia will grow considerably over the coming decades.

Continuing with today’s treatment, care and support arrangements is widely seen as unsustainable and unaffordable.

A major challenge is how to provide high-quality treatment and support to these individuals at a cost seen as affordable.”

I arrived early and had time to catch up with Adelina and others.

Amongst others, I also met Margaret Dangoor who was involved in the Reference Group for the project and she has invited me to join the Reference Group for a new Project starting in the new year.

I was shown into the hall where a seat had been reserved at the front.

After the usual welcome and housekeeping speakers looked at the cost of Dementia

Multi-morbidity

at how interventions may help with dementia treatment/care and at what cost.

a view to the situation in 2040, they looked at:

Present cost of Care and Support.

Future cost of Care and Support.

and Adelina talked about the existing care pathway

The day ended with a panel session including Matthew Norton, Chris Roberts. and Margaret Dangoor

Having said my goodbyes, I got a taxi to St Pancras to wait for my train home.

All in all an informative day, no loud music and I was made to feel very welcome.



 

Trent Dementia – Life with Dementia

Recently, I travelled to Nottingham for a Trent Dementia event supported by DEEP UK and Innovations in Dementia CIC.

I arrived at the Railway Station early to meet Julie Hayden who was travelling to the event from the Halifax area.

Unsurprisingly, her train was delayed but we made our connection to Nottingham ok.

Once in Nottingham, we took a Taxi to the Racecourse, where a couple of Trent Dementia members directed us to where the meeting was taking place.

The room was full by the time we arrived, with Professionals, representatives from Charities, People living with Dementia and the Care Partners.

DEEP UK had arrived the day before, had done an audit of the venue and on the morning of the event had put up additional signs, directing us all to the Hall, side Rooms and Toilets.

The event as well as showcasing the great work that Trent dementia does it was also to encourage DEEP groups to form in the Trent Area.

Members of Trent Dementia and DEEP UK including myself spoke during the morning.

The board of Trustees of Trent Dementia were there

as were Rachel Niblock and Wendy Mitchell

Shelagh Robinson

and George Rook from DEEP UK

I took my turning about the importance of including our care partners and family.

In the afternoon, there were side sessions about various issues around Dementia.

I took part in one about Friends and Family with Wendy Mitchell and a lady called Rae.

The details of the other events are lost in the fog of Dementia but I am sure they were very informative for those attending.

The traffic was bad in Nottingham so we had to leave about 15 minutes before the end, joined by Wendy Mitchell and Damian Murphy on our travels home.

Once we arrived at Sheffield Station we said goodbye to Wendy and Damian and I waited on the platform for Julie’s first train taking her back to Halifax via a change at Wakefield  arrived and I then made my way home by taxi.

All in all a good day, hopefully the start of something in Trent to further the work of Trent dementia.



 

 

Rant Wednesday

The monster that is the questioning of people’s disabilities has reared it’s ugly head again.

Time and again, people that should know better question our disabilities.

Yet, until they have walked in our shoes, they are not qualified to question our disabilities.

Professionals learn about the mechanics of a disease from textbooks and day to day contact with people with disabilities.

People generally only see the media perceptions of Dementia and experiences of the Palliative stage of Dementia.

They cannot learn the lived experience, they have to live that experience.

They cannot see hidden disabilities but we live and experience them everyday.

With all the stigma around disabilities, no one chooses to have a diagnosis of Dementia or any other chronic terminal disease or disability.

Image may contain: text that says ""If you can't say something nice, don't say nothin' at all!""


Examples of where the United Nations Convention on the Rights of Persons with Disabilities gives us a platform to advocate without our rights being abused.

Our rights under the United Nations Convention on the Rights of Persons with Disabilities include:

Article 1 says why there is a Convention on the Rights of Persons with Disabilities – to make sure disabled people get all their human rights and to encourage everyone to respect the dignity of disabled people.

 Respecting the dignity of a person is recognising them as a person of equal worth to others. This means showing real respect for their feelings, views and privacy, and always treating them as an individual. This is the absolute starting point for human rights – for everyone.

Article 2 explains what different terms mean, like “communication”, “language” and “universal design”.

Article 3 sets out 8 general principles of the Convention. These are:

a)    Respect for each person’s dignity and personhood – like other human beings, disabled people are not the property of other people. You have your own thoughts, feelings, ideas and plans which other people should respect;

b)   All the rights in this Convention belong to every disabled person;

c)    Disabled people are full and equal members of society;

d)   Everyone must be respected. That people are different is a good thing that helps make a better society and world;

e)    Every person must have equal chances in life;

f)    There should be equality between males and females; and

g)   Children usually gain more understanding and ability to do things and make decisions as they get older. There is no fixed age for this: it all depends on the individual child and what you want to do or decide. Countries that agree to this Convention agree to make sure everyone understands that children are usually able to make more decisions over time.

Article 4 of the Convention places a massive duty on governments to do everything they can to make a reality of all the rights for all disabled people living in their country.

Article 25 gives disabled people the right to the best possible health without discrimination. Governments should make sure health services understand the needs and rights of males and females. They must also:

(a) Give disabled people the same range, quality and standard of free or affordable health services as other people get, including services related to sexual and reproductive health

(b) Provide services that specifically meet the needs of disabled people, including children. This includes services that minimise and prevent further disabilities

(c) Provide services as close as possible to where people live, including in rural areas

(d) Make sure professionals give disabled people the same quality of care as non-disabled people, and that they understand and raise awareness of human rights

(e) Make sure it is against the law to discriminate against disabled people in health or life insurance

(f)  Make sure it is against the law to deny food or fluids from people on the basis of their disability.

Article 26 is about the right to be independent and to be fully included in society. It sets out the things that government must do. This includes supporting participation and inclusion in all parts of society and making sure professionals get training to help them uphold the rights in the Convention.

Article 29 gives us the right to be active politically and to take an active role in society.  It includes the right to be a member of a non-governmental organisation and political party.


Conclusion

Shouldn’t professionals be aware of the emotional and psychological damage that their inane comments cause?

Could they be bringing their profession into disrepute?

Should their professional bodies be doing more?

One thing is sure reader, Dementia is no longer a silent disease and people with a diagnosis will not be silenced by the ignorance and the negative narrative of others.



 

In The Blogs – November 2018

Professional Questioning……

We Live in such a Tiny Bubble……..Poem

A Dr failing to understand Dementia, and the risk that poses

Dementia in the media…unsound and unbalanced

Inappropriate Prescribing: A Reminder

Post Code Lottery

“Roots to Occupation” by the Scottish Dementia Working Group @S_D_W_G

Doubting a diagnosis of Dementia

A response from Alistair Burns on the ‘Living Well’ debate…..

Rehabilitation for dementia: Evidence & Opportunities

Changing Relationships with my Daughters……

Rehabilitation: the future of Dementia care

#CarersRightsDay: We Need to Support an Increase in Carers Allowance Across the UK

In The News – November 2018

Butterfly Care Homes bring humanity to those living with Dementia

Dementia in Europe: a public health priority?

Too many Dementia patients prescribed potentially inappropriate drugs, study finds

Sheffield widower says ‘callous’ health bosses took wife’s dementia care away just weeks before she died Read more at: https://www.thestar.co.uk/news/sheffield-widower-says-callous-health-bosses-took-wife-s-dementia-care-away-just-weeks-before-she-died-1-9470413

Family’s lonely fight over dementia hospital death

Petition raising fears over ‘freedom deprivation bill’ tops 100,000 signatures

How sport can benefit people with dementia

Why prescribing playlists for people with dementia is on the money

Dementia patients should be prescribed ‘personal playlists’ to trigger happy memories

People With Dementia Like Me Need Help To Stay In Work

Companies running ‘inadequate’ UK care homes make £113m profit

UN expert tells of disabled people’s ‘horrendous’ evidence on poverty

Young people with dementia need new approaches to care

Social care: ‘How do others manage without the extra we’re able to afford?’

Ministers’ ‘shocking’ failure to consult DPOs on bill shows UN convention ignorance

Dementia is ‘biggest health and social care challenge’ Read more at: https://www.louthleader.co.uk/news/dementia-is-biggest-health-and-social-care-challenge-1-8712205

‘We need their brains’: donating to the brain bank in search of a dementia cure

Most caregivers of people with dementia are family members, and they need help



 

Sunday Musings – 02 December 2018

The questioning of people living with a diagnosis of Dementia continues.

In the Australian Journal of Dementia Care, Kate Swaffer, CEO of Dementia Alliance International has written a response in an article here

When will the *Dementia Doubter’s stop showing their ignorance and massaging their ego’s.

December will supposedly bring the Green Paper on Social Care.

At a recent Forum in London, Matt Hancock MP confirmed that he wished to have a minimum level of post diagnosis support that the CCG’s and NHS Trusts cannot cherry pick, Caroline Dinenage MP also confirmed this when she spoke at the Dementia Friendly Awards in London last week.

Jimmy McGovern writes in the Guardian yesterday “We can’t dodge the issue of care for the elderly any longer”

The devil as always, will be in the detail.

The Daily Express article Care: TV drama to reveal anguish of Dementia perpetuates the negative narrative of Dementia using words such as Anguish and Stricken.

With more people being diagnosed at an earlier stage of Dementia, the Media and Dementia Doubters need to realise that you are the same person the day before your diagnosis and the day after your diagnosis and that you can live within the reducing limitations of that diagnosis albeit with an increasing need for support in line with the United Nations Conventions.

The so called end stage of Dementia should be seen as the Palliative stage which would enable us to be receiving inclusive respectful care rather than the abusive involuntary care we are currently subjected to, which ignores our rights.


What’s On

Tuesday 4th December, Sheffield Age UK Dementia Group Sessions

Videos

Peter Berry’s 74th Weekly Video

Stephen Tamblin’s 30th Weekly Facebook Video will hopefully be next week as he has been unwell this week.

You can also catch Stephen’s 5th video on YouTube

Patrick Italo J Ettenes talks about meeting Manchester’s Mayor and funding for some oif the work he is involved in

It’s called Fast Track… Manchester is having their own HIV campaign to bring awareness.


Poetry

Susan Macaulay’s has published a beautiful Poem “An Alzheimer’s Christmas Story”


Blog

Elaine M Eshbaugh’s blog about Sacred Spaces, Being Vulnerable, And Strangers In Your Bedroom In Dementialand

The Alzheimer’s Society – 3 Nations Dementia Working Group

The Alzheimer’s Society 3 Nations Dementia Working Group (3NDWG) is a group of people diagnosed with dementia who want to make a difference whilst we still can by:

  • Improving the lives of those with dementia
  • Improving the lives of those who support and care for people with dementia
  • Helping the work of professionals and policy makers working in this and related areas

The group now has a website.

You can read about the groups Aims, Ambitions and Achievements here.

Membership of the 3NDWG is open to all people with a diagnosis of dementia (or a re-diagnosis of mild cognitive impairment following a dementia diagnosis) living in England, Northern Ireland or Wales.

You can apply here.



 

 

 

UK Dementia Congress 2018

Recently,Congress is attended by professionals involved in Dementia Care and services wishing to be informed about and share good practice and innovation.

Importantly, it is also attended by people living with Dementia and those that care for a loved one.

It is an important opportunity for information to flow from both sides of Dementia, from the professional experience to the lived experience, an opportunity to learn and grow better understanding.

Members of DEEP UK did an audit of the venue and placed additional signs to guide us around the building, although I was confused by the sign on the Accessible Toilet as it had a Men’s Toilet and Women’s Toilet sign on the door, so I went in looking for a door for the Men’s Toilet, such is like with Dementia.

There were a lot of informative stands and on the whole the Plenary and Side Sessions were very good.

Some of the 3 Nations dementia Work Group, Steering Group attended and we all spent time on the stand

The one downside was a video played at one of the Plenary Sessions which was too loud.

Myself and others sat with our fingers in our ears and made the rest of the day more challenging than it might have been.

I have Hyperacusis, meaning I have issues with loud noises which can be cognitively challenging.

The highlight was a side session titled “I want to die”.

A seldom discussed topic, for many reasons. People talk about a good life with Dementia, well surely we should be able to choose how we have a good death with Dementia but that is a subject for another time.

On the whole though it was and excellent 3 days and thanks must go to Richard Hawker and his team.



Resources

Official Programme

George Rook’s “Congressional Blog”

Media Release – Dementia Alliance International

Media Release

Thursday 28/29 November 2018


Dementia Australia and Dementia Alliance International to globally champion rights of people living with dementia. Dementia Australia has formalised its relationship with Dementia Alliance International and today signed a new memorandum of understanding (MOU).

Dementia Australia CEO, Maree McCabe said the MOU recognises both organisations are aligned in their purpose to promote awareness and understanding of dementia and to advocate for the autonomy, independence and human rights of people living with dementia.

“We share a commitment and vision for a world where people living with dementia are valued, included and receive the care and support they choose,” Ms McCabe said.

Dementia Alliance International Chair, CEO and Co-founder, Kate Swaffer said the organisations would advocate together to expand the awareness and understanding of dementia across the aged care, disability and health care sectors in Australia and on the world stage.

“Together we will liaise on global dementia policy issues, to ensure our policies and programs are aligned to the WHO Global Dementia Action Plan” Ms Swaffer said.

Dementia Alliance International is the peak organisation with membership exclusively for people with a medically confirmed diagnosis of any type of dementia from all around the world.

“As the global voice of dementiaDementia Alliance International provides a platform for the many people living with dementia who are capable of representing themselves, or speaking up for those who are no longer able to,” Ms Swaffer said.

“We have members in 48 countries, and self-advocacy is becoming a strong focus, where we work with members of Alzheimer’s Disease International, such as Dementia Australia, to empower others to have a voice.”

Worldwide it is estimated there are 50 million people living with dementia. This number will almost double every 20 years, reaching 131.5 million in 2050.

“According to Alzheimer’s Disease International research, someone in the world develops dementia every three seconds,” Ms Swaffer said.

Dementia Australia is the national peak body and charity for people of all ages, living with all forms of dementia, their families and carers. Dementia Alliance International is the global peak body representing people with dementia.

“Dementia Australia is the first national dementia association to partner with us, and DAI is very proud to be more formally working with them,”Ms Swaffer said.

“It is a natural fit for the two peak bodies to work together to promote awareness and understanding of dementia,” Ms McCabe said.

For further information visit the Dementia Australia website at www.dementia.org.au or Dementia Alliance International at https://www.infodai.org.


Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and care partners. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia’s services are supported by the Australian Government. www.dementia.org.au

Dementia Alliance International(DAI) is a collaboration of individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia. The aim is to bring the community composed of those with dementia together as one strong voice to urge the government, private sector, and medical professionals to listen to our concerns and take action to address this urgent global crisis. It is our firm belief that working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met. DAI is a registered charity in the USA, and the global voice of dementiahttps://www.infodai.org

Dementia is a Global and National Health Priority Area

Media contacts: Louise Handran louise.handran@dementia.org.au +61 490 128 304 / Kate Swaffer chair@infodai.org

When talking or writing about dementia please refer to Dementia Language Guidelines.

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