Dementia - who is blogging about it?

For the past couple of years we have greeted the New Year here on the blog with a round-up of some award winning mental health blogs. Some of these bloggers, such as Mental Health Cop, are well-known and have attracted large numbers of readers. The more niche the topic, often the more useful the information/comment provided by these blog authors.

This year, however, we have decided to focus on dementia blogs. With the growing success of dementia friendly communities around Powys, and an increasing awareness around dementia with schemes such as Dementia Friends, it seemed not just appropriate but high time!

So here are some of our favourite dementia blogs, written by people with dementia, those close to them, and others who are working to support them – whether in the statutory, voluntary or private sectors.

We hope you enjoy dipping into their blog pages, and if you know of others you would like to recommend just add a comment below. We would really like to hear from you.

1. Adventures with dementia

“My wife has dementia. She first attended a memory clinic in 2000, aged 52, and suffered a marked decline in the autumn of 2011. Since then there have been some improvements, despite the fact that she has now (after 12 years investigation) been diagnosed with Alzheimer's Disease.
We try to follow the advice of our Guru: 'Live a Good Life'. It's not easy but there doesn't seem to be any better advice around.
I found myself saying to a friend that I would find my wife's condition very interesting if I wasn't so involved. I've realised now that I do find it, and the issues it raises, interesting.”

This blog was started in 2011 and is packed full of useful information. The latest posts focus on A visit to the dentist, Paying GPs £55 for diagnosing dementia, and Disability Living Centres.

2. (Dementia just Ain’t) Sexy

“No photos of wizened hands here! Not a daily care blog or advice site, this is a place to share thoughts about the impact of dementia on those who live with it – who could be any of us.”

3. What I’d have done differently if I’d known my Mother had dementia

“I thought I didn’t know much about dementia until I read a research proposal on unusual experiences of people living with severe dementia – such as confusion, hallucinations and delusions. Suddenly an old and squeaky door opened and I found myself looking into a dark and scary room in broad daylight for the first time.”

A post on the Changing Minds, Changing Lives mental health and learning disability website that has provoked some interesting comments too.

4. Living in the shadow of Alzheimer’s

“This blog is about life with my husband who was diagnosed with Alzheimer's and Frontal Lobe Dementia in 2008. He was 64 at the time although now, knowing more about the disease, Alzheimer's was present many, many years ago, which is why early detection is so important. As you read the blog "Al" represents the way that Alzheimer's is invading our daily lives.”

Daily updates on living with Alzheimer’s from across the Atlantic, but so many of the day-to-day issues are relevant too here in Wales.

5. A dementia voice

“You can still live a life with dementia” is the strapline of this community of bloggers from across the UK, some of them living in remote parts of the Scottish Highlands. Several are members of the Scottish Dementia Working Group.

6. Dementia Journeys

“We aim to share dementia related news and information from around the world as well as sharing your Dementia Journey stories.”

Dipping into recent blog posts we find articles on Activities and stories to share with adults with dementia, Hospices and their ethos of care, and raising awareness of dementia with The Purple Angel – a new symbol emerging from Dementia Action Alliances in Devon.

7. Pippa Kelly

“I write every day about one thing or another, mostly about the elderly, their care and its funding, and about dementia, which stole my mum from her family in a drawn-out 10-year raid.”

Pippa originally wrote an article which appeared in a Sunday newspaper called Dementia: the longest, cruellest goodbye.

In 2014 she received an Older People in the Media Award from John Sargeant.

8. Young Dementia

This site has links to numerous blogs, some written by people with young onset dementia, and others written by the family members of those with this diagnosis.

So, that’s a lot of reading to dip into! We hope you find a blog that can help, inform, interest or inspire you – but if there are others out there you want to let us know about, please comment below.

And if you would like to write about your experience of dementia, especially if you are based in Powys or have a family member or friend who is, please get in touch.

Dyfed-Powys Police: Dementia Friendly and Neighbourhood Friendly

Dyfed Powys Police is running an initiative to raise awareness of dementia in our communities and Inspector Brian Jones is at the forefront. In this guest post he tells us more about the initiative in Powys.

Inspector Brian Jones was born into a rural community near Hay-on-Wye and has spent his life in and around the county of Powys. Joining Dyfed Powys Police in 1994, he worked his way up the ranks, filling a variety of roles, to his present position of Neighbourhood Development Inspector, responsible for forging links with partner agencies to develop an integrated approach to addressing community problems. He is also responsible for equalities and the development of links with under-represented groups within the local community in order to increase police knowledge, understanding and awareness of the plethora of issues impacting on modern day life. 

Each of the four areas that make up Dyfed Powys Police has established a Confidence and Equality Group (CEG). These groups are organized by the police and seek representatives from communities that include young people, aged 16 to 25 years, elderly people, people with disabilities, people who are gay, lesbian, bisexual or transgender and people from minority ethnic communities. The purpose of the CEGs is to ensure access by under-represented groups within the community to the police and to provide a forum to discuss and resolve the needs and concerns of the community.

Brian chairs the Powys group, which meets quarterly, and involves members from these under-represented groups, as well as those actually living with a condition, for example, mental health. “I want the group to have a wider membership and create wider awareness”, said Brian. “To this end, the CEG meetings have been themed since 2012. These themes have covered a range of issues, such as mental health, dementia, ageing population and autism, to name a few.” 

Dyfed Powys Hate Crime Support Officers

The Powys CEG meeting, which is attended by a mixture of partner agencies and Community Support Police Officers, was held in November 2013. The theme was Dementia and Rhiannon Davies, Chair of the Brecon and Hay Dementia Friendly Community Group, agreed to attend to present the case for people living with Dementia. “It was following this meeting that Rhiannon asked me to become a Dementia Champion, which I did, and all 34 attendees subsequently signed up to become Dementia Friends,” said Brian. “Having this increased awareness and understanding of dementia is vital in assisting the police to treat those living with dementia with dignity and respect, to react appropriately to situations involving such people and to give the wider community the confidence to come forward, knowing that we, the police, can deliver the quality of service and support needed.” 

With his Dementia Champion hat on, Brian has now given Dementia Friends sessions to the scouts, to senior police officers and is soon to present a session to the Police Call Centre based in Carmarthen. All Hate Crime Support Officers throughout the 4 areas of Dyfed Powys Police are now Dementia Friends, trained by Brian. He also presented a session to the Powys Mental Health Planning and Development Partnership, as well as to a seminar for nurses and midwives. It is perhaps testament to the success of Brian’s role as a Dementia Champion and Neighbourhood Development Inspector that a police officer should be asked to stand before a group of health professionals to present the case for dementia.

Besides himself, Brian now has five Community Support Officers trained as Dementia Champions, whose responsibility it will be to train all staff in all stations in the Powys area.

For those police officers who have become Dementia Friends, the badge now forms part of their uniform and it is noticeable that wearing the badge opens up doors and initiates conversations. “My ultimate aim is for Dyfed Powys Police to become a Dementia Friendly organization” said Brian. “There are so many instances when we might be called upon to engage with someone, whether a carer or the family of someone, living with dementia. Whether it’s a missing person, a victim of hate crime or domestic crime, the level of response is extremely resource-intensive for the police. The key to providing the correct response, to picking up signals at an early stage, to treating people with dignity, respect and understanding, is in having that insight, that additional awareness, whether we’re dealing with dementia, autism or mental health.” 

“I’m very proud of how we’ve been able to change the culture within the organization over the last 20 years to where we are now” said Brian. “The culture of communities is changing as well and therefore how we engage with and police them and I’m proud to be part of that too.”

Do you live in a Dementia Friendly Community? Let us know what you think or if you have any queries in the comments box below.

Dementia Supportive Communities Tackling Stigma in Powys - Sometimes It's The Small Things That Can Really Change Our Lives

"I first came across Rhiannon last year.  She enticed me with her passion to go along to an event she had been instrumental in planning in June 2013.  I wasn't disappointed and the event in turn inspired me to write a blog; Unconventional Wisdom: Dementia and Mental Health - Uncomfortable Bedfellows?

Since then members of my team have followed the progress of the work and tried to do what we can to help.  Glynis, a member of our team, attended a Dementia themed event initiated by Dyfed-Powys Police in December 2013 and you can read about this in Dementia Champions.

So when Rhiannon contacted me this week asking whether I could use her latest article anywhere, I was delighted to be asked.  So thank you Rhiannon for providing the team with this our latest guest blog."

Working towards Brecon and Hay becoming Dementia Supportive Communities

Dementia Friends Champion Training, April 2014

In a bid to help end the stigma surrounding dementia, Alzheimer’s Society has launched the Dementia Friends programme in Wales.

Aimed at giving people a better understanding of dementia, and the small things they can do to make a difference, Brecon and Hay were two of the first towns in Wales to adopt the scheme.

“In Powys, there are around 2500 people living with some form of dementia and this number will only increase in the forthcoming years” said Rhiannon Davies, chair of the Brecon and Hay Dementia Supportive Community group.

“For many people, the battle is not just about getting a diagnosis and support from the health and social care system, but about the everyday things that you and I take for granted - going to the shops, getting money from the bank, visiting the library, taking public transport, participating in leisure activities and hobbies. All these are made more difficult by the stigma and fear attached to the condition. This often leads to people with dementia and their carers staying at home, becoming more isolated and lonely.

“This is where Dementia Friends comes in. With understanding, support and encouragement we can help people with dementia and their carers to remain part of the community, so they can continue to be valued customers, be more active in the local area and live better more fulfilled lives.”

A trained volunteer Dementia Friends Champion herself, Rhiannon is passionate about the initiative.

Brecon Llanfaes Girl Guides become Dementia Friends

“It’s about valuing and respecting the individual, seeing them for who they are rather than the condition they have. Getting the message out there that dementia is not just a part of the ageing process, and with the right support and understanding people with dementia, especially in the early stages, can live well is so important.

“We also need to recognise how challenging it can be for carers, and give them our support too.” she continued.

To-date a range of community associations, organizations and businesses have benefited from Dementia Friends sessions in Powys, with feedback being very positive. Over 250 people have chosen to become dementia friends, and made a commitment to turn their new-found understanding into action. Each session lasts about an hour.

Read more about Dementia Awareness Week May 18-24th 2014 here and the events happening across Powys.  You can also access a press release here.

For those interested in becoming a dementia friend or organising a Dementia Friends session or becoming a Dementia Friends Champion visit www.dementiafriends.org.uk

Or contact Jean Nowell, Alzheimer’s Society dementia support worker jean.nowell@alzheimers.org.uk Tel: 01874 712083

Or Rhiannon at rhiannon.aber@btinternet.com Tel: 01874 676617

"Thanks Rhiannon and I hope this inspires others to support your work."

Dementia Champions

by Glynis Luke

I recently attended the Dyfed-Powys Police Confidence & Equality Group which met to raise awareness of dementia. I was there not only representing the PAVO Mental Health team but also because of my interest in learning more about dementia. The meeting was also attended by a wide range of representatives which included Powys County Council Equalities, Disability Powys, Powys Teaching Health Board, Mid & West Wales Fire Service, Youth Services, neighbourhood Policing Teams from each of the areas of Powys and Police Chaplaincy.

Multi agency Dementia Awareness Day

For many people with dementia the battle is not just about getting diagnosed and support from the health and social care system, but about everyday things we all take for granted. The majority of those living with dementia live within their own community and are cared for by their families. I have a particular interest in all that is dementia as a close family member suffers with this progressive atrocity, so for me it was interesting and captivating to listen and learn from the three guest speakers.

The meeting was chaired by Inspector Brian Jones who introduced the three speakers. The first was Rhiannon Davies, an Alzheimer’s Society volunteer and chair of Brecon & Hay Dementia Support which represents a growing group of people who are working towards developing Hay and Brecon to become a dementia Friendship Community. This would mean a community that demonstrates a high level of public awareness around dementia.
Rhiannon asked the question: What are the issues and why do we need this?

For people with dementia the problem is not just about diagnosis and help from The Alzheimer’s Society. It is about the everyday needs that we all take for granted, for example, spending time with family and friends or following hobbies. It means people can have their confidence maintained allowing them to live in their community and be able to manage their everyday lives. In Powys there are currently 2000 people diagnosed with dementia; with an aging population this will rise to 3000 within the next eight years. It is a growing issue.

The majority of people live within the community and are cared for by their families, with many of those families reluctant to share what they are facing because of the stigma. It became very clear that just going to the bank or visiting the shops can be a battle. It can lead to loneliness and is compounded by the geography that is Powys. Rhiannon spoke with passion when she told us that these people genuinely need our help, that these people deserve to be valued, respected and very importantly we can all learn from each other.

There have been several initiatives that have started up recently such as The Hay Day project and the Dementia Supportive Community in Brecon which Laura wrote about here. but there is a lot more that needs to be done. A grass roots project is needed within communities with the voluntary and public sector organisations all working together with shared aims to enable people with dementia and their carers to live well. This initiative would raise the profile of dementia e.g.training in statutory and voluntary organisations appropriate to the needs of the people working in services.

Rhiannon spoke about Dementia friends and champions, a pilot scheme that would be initiated across Wales. There was an opportunity to sign up to this initiative after the meeting with the aim of working together to raise dementia awareness as Dementia Champions. It was hoped that the way forward would be good housing, good transport, good facilities and social inclusion.

The second guest speaker, Cherry Jones, had been a carer for her mother until she had been moved into a residential home. Cherry spoke about her experience of dementia whilst supporting and caring for her mother. She shared her experience of the impact of dementia, through the media of her storybook, on herself, on her family and friends. This was very emotive, powerful and informative; from the issues of inappropriate chats between her mother and young people, her mother’s vulnerability issues from visiting adhoc door to door salesman, driving hazards, losing possessions ……a minefield of confusion. The concerns for her mother were very real:

"What will happen to me?  I want to be an ordinary woman."

Someone in the audience responded: “They are robbed of this part of their life so it is up to us to help them to live as well and as fully as possible …….for as long as possible”.

The third guest speaker was Jean Nowell, an Alzheimer’s Society support worker from the Brecon area. She was keen to work to promote the Dementia Friendship Society. Dementia affects people in different ways and essentially leads to cognitive impairment and she explained the various diseases that came under the umbrella of dementia. The Alzheimer’s Society currently has a five year strategy “delivering on dementia” to provide maximum benefit to people through national and local services. This links in with dementia support in the community.

There is a national helpline: 0845 300 0336, a monthly magazine here and an online community forum, details here.

• A series of memory walks have been taking place, all raising money to provide vital support to people living with dementia and to help research a cure for the future. 
• A befriending service has been introduced. 
• Information and practical help initiative (e.g. lasting Power of Attorney, respite options, relevant agencies to contact).
• Singing for the brain (structured singing groups that have a positive impact for those with dementia). 
• Dementia Cafes in a supportive environment, keeping all active and involved.
• Jean spoke about the fears, anxieties and effects on the carer, the 24/7 toll, you can read more in her presentation here. 

A question and answer session ensued and it was clear that there are a number of occasions where the police are called upon to assist those living with dementia and their family members such as when a person is reported missing and there is concern for their safety. I certainly felt that having an increased awareness would mean that a more integrated approach could be taken to support those requiring assistance and which would ultimately enhance the confidence that members of communities across Powys have in the partnership work.

It was very encouraging to see the thirty four attendees all signed up to be ‘Dementia Champions’ and encouraging to learn that this is only the second group to have done so in Wales. All of us will now be doing something different to support those living with dementia.

The ultimate goal: a world without dementia

Featured in the photo at the top of the post:

L to R: back row: Inspector Brian Jones, Partnership Inspector & Chair of Confidence & Equality Group, Neil Evans – Community Safety Manager Mid & West Wales Fire Service, Police Constable Paul Dyer – Llandrindod Wells Neighbourhood Policing Team, Police Sergeant Craig Morgan - Brecknockshire Neighbourhood Policing Team, Harold Proctor – Performance Mental Health Manager - Powys teaching Health Board (Dementia Lead), Leigh Spicer - Dyfed Powys Police Chaplain.

middle row: Rob Beardall – Powys County Council Equality Officer, Sheelagh Hughes – Disability Powys, Cherry Jones - Dementia Carer, Rhiannon Davies - Alzheimers Society Volunteer & Chair of Brecon & Hay Dementia Support Community Steering group, Jean Nowell - Alzheimer’s Society Dementia Support Worker, Becky Jones – Community Psychiatric Nurse, Older Adults, Powys Teaching Health Board, Police Community Support Officer  Graham Jennings – Newtown Neighbourhood Policing Team.

front rows: Sue Cox – Powys Youth Services, Sharon Sharmon – Service Manager Adult Mental Health, Powys teaching Health Board, Jan Rogers - Ponthafren Association (member and trustee), PCSO Sally-Ann Neville – Welshpool Neighbourhood Policing Team.