Thank you all for joining. Debbie Abrahams will be joining a few minutes later due to an urgent briefing she is attending on the situation in Ukraine.

Thank you Trevor - I think you reflect a very poorly recognised area of young onset dementia (often as numbers are lower) in the need to maintain meaningful activity/employment with reasonable adjustments. Personhood is of course important for all people living with dementia, but the needs of those living with young onset are often neglected.

Hi Karin, thanks so much for joining. We'd be very happy to add you to the panellists on screen if you'd like? Totally understand if you'd prefer to stay in the virtual audience though.

I agree with you Gary, people with early onset dementia also have unique circumstances when it comes to family responsibilities and established roles

I agree, we also have a huge waiting list for people actually getting a diagnosis...

The sad thing is we’ve been talking about this for nearly 20 years.

Yes Admiral Nurses are such a wonderful resource.

completely agree . Awareness is lacking as is support and knowledge of available support. My father was diagnosed and we were just told there was nothing more the health service could do . we had to seek help ourselves . Not everyone can do this .

there really should be counselling following diagnosis of dementia

People often share with us that they feel unsure about which service is which, often feeling overwhelmed...time to explain and talk through an individuals situation is minimal to say the least. Support services are there, often though, people are overwhelmed emotionally...

I agree with Paul in that there is insufficient information for people first facing Dementia. My wife has had Alzheimer's for 4 years and over that time I have created the internet site dementiaguidance.co.uk

also a buddy system with someone who is living with dementia or an introduction to a group to offer support locally should be provided.

this would be best funded, at least for transport or time and professional support

Suffolk Carers Matter have a fantastic reach out for a counselling service for carers and family members, not specifically for the individual with the diagnosis...

In our research at Liverpool University, we see lots of barriers to care after a diagnosis for people living with dementia and unpaid carers unfortunately, including lack of awareness, where people live (postcode lottery), their personal background, whether they have a family carer ot not, and many more

I was heavily involved in the care of my Mum who had dementia. During what I thought was a regular appointment, the diagnosis was delivered. I had no advance warning that this was "Diagnosis Day". This meant I was less able to support my Mum emotionally. I would like to suggest this approach is adjusted from the health services.

We should do everything we can to support people living at home as long as possible but as dementia progresses the family carers are crucial . They are the biggest workforce but are trained for the job. I recognise everything Trevor is saying - been there! We need risks.

The memory teams in Suffolk are able to pass on and refer directly to our support...however as Trevor said, people at this time still say that they felt "left to it"...again highlighting a need to be supported emotionally to "take it all in", process the information.

Unfortunately, I haven't had a good experience with a Social Worker nor Admiral Nurse, the latter who said her remit (my words) is to support the carer.

I am a Dementia Champion and the terminology we use is Person living with Dementia not Dementia sufferers

At tide, together in dementia everyday, we support carers to maintain their health and support other carers with peer support. Www.tide.uk.net

I can say as a previous memory service manager that was also my experience Trevor - all my funding for PLWD & carer support / education groups was removed and funding was focused on diagnostic rates and transfer back to primary care. Memory service became diagnostic & pharmaceutical focused at the loss of supporting living well with dementia activity / intervention. I hope it has improved.

I have just been looking at a care home - Trevor, how did you choose the right one and did you tell your wife she was going into a home - this is my dilemma with my sister, since she doesn't even know she has Alzheimer's.

When your loved one goes in to care home the quality of their life and your life improves by reducing the daily stresses.

I totally agree with Trevor - it's about love, and knowing your loved one well. Absolutely - what is best for the loved one will mean a peacefulness in knowing we have done our best for them.

Absolutely , a really good care home with trained caring staff can be at time , much better for loved ones . Looking for the right home is key .

Great to have Admiral Nurses highlighted here, they provide vital support that is otherwise not available. If you want to learn more about the differences and support provided by Admiral Nurses and Dementia Care Navigators across the UK, join us for our next free public Liverpool Dementia & Ageing Research Forum webinar on the 30th of March from 1-2 pm, everyone welcome and time for discussion: https://www.eventbrite.co.uk/e/liverpool-dementia-ageing-research-forum-march-2022-tickets-254497838887

Although the experience of finding the right care home can be extremely stressful I found that providing a summary from Dad’s life story helpful. The home used this to ensure his care plan was personal to him. I trusted them and was a full partner in his care.

I am PLWD and have been since 2010. I'd like to share and comment on the topic. Is it possible to come on the mic please?

Family dynamics can be really difficult to manage, especially when some family members live a far distance from the person with dementia. Trying to navigate the complexities of dealing with social services/carers/NHS/DWP etc AND translating that information for family members was a huge burden.

Long story really, Philomena, and no I never told my wife she was going into care. I longlisted six homes and evaluated them over 3 months. the one I selected was a newish build, specialized in dementia care and promised a person centric approach. They have dleivered 100% on this and my wife has been happy from day 1

Yes Linda we do not talk about ‘diabetic sufferers let alone blind sufferers but I am sure it was not badly meant!

It can also make a huge difference if the allocated social worker is from the Mental Health Team and not just the team for older adults

Totally agree with Trevor and his experience. I had no support when my mother was diagnosed - the consultant just told us the diagnosis and then discharged us. I also tried to get support from admiral nurses but there was nothing available in my area. We coped with the dreadful situation alone.

Hallo` to everyone.This is very interesting and informative talk. I am really sorry I have to leave this meeting because of other commitments. Lots and lots of kind regards.

My Admiral Nurse helped me understand that managing risks of Dad living alone at home was positively managing the risks and so moving him to long term care was a fairly easy decision. It was right for both of us.

Thank you, Trevor. I too have seen 5 and just chosen one but I do think areas differ. I live in North London and my sister in Essex. Thanks again.

Apologies just seen, it’s been such an absorbing session and have to go now. Very powerful session. Thank you to all for sharing in such a personal but candid way

A recent report by the IDEAL study at Exeter University found that only 50% of people living with dementia outside of care homes, where the majority do live, had not accessed *any* community based services. That’s the context in which people decide (often not for themselves) to move into a care home: in a widespread paucity of community based support. I hope your inquiry will spend time exploring this. Here’s a great example of something that made a huge difference to my dad & mum https://www.community-circles.co.uk/encircled-with-love/

Having a formal diagnosis helps with referral to services without that formal diagnosis it can be very difficult

In Brent, London, we have Dementia Cafés and a team to offer practical and emotional support. Contact me for info Gabby Horecka gabby.horecka@ashfordplace.org.uk

I am sorry to hear that Diane. Please do call Dementia UK's Dementia Helpline to speak to an Admiral Nurse - https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/ or you can book a virtual appointment here https://www.dementiauk.org/get-support/closer-to-home/

Gay does your Mum get Attendance Allowance and Council Tax (100%) Exemption see https://www.dementiaguidance.co.uk

Sadly in Brent it may all disappear come the end of the year as our funding is finishing

Something I think would be helpful, is information on supporting people with dementia when they are still "with it" enough to understand their situation. My Mum was very distressed by the behaviours of fellow residents in the care home. Obviously they couldn't help it, but she was witnessing the road ahead of her. It is understandable she became upset.

Do we have a plan in place for a structured training plan for carers backed up with a clear career structure ?

Hi everyone, the points I would like to raise are:- Rural Dementia

Fantastic coordination Trevor!

Good care includes all of the things described - person centred care, compassion, love etc - However, these are often taught in nursing / social care as 'soft skills' at the cost of task orientated interventions - the two are as important as each other so need to be given equal value.

Genius approach re the bird feeder! Fabulous example of a personalised care plan.

Philomena

We are also so low at staffing levels that Care homes find it so difficult to have those bespoke conversations...

I followed the same approach Trevor. Relationship based care is essential. Life Story Network and tide provide training to NHS and social care staff in this approach.

Thank you Trevor, this is what I have done too but my sister has yet to go into the Home but needs it urgently now. I shall take your comments about the bird feeder on board, that's brilliant.

Philomena - and I think the QCC Reports are vital.

CAD Brent have found that the impact on the whole family can really affect the person living with dementia, and the stress on the primary carer can have huge impact on their health, which is a neglected aspect of post diagnostic care. In addition people who live alone with dementia often get quickly lost in the system as their condition progresses. For instance one member of our dementia support group shared issues he was experiencing, despite having an active and sociable life, as a result a fall was a direct route into rapid deterioration in both his physical and mental health.

It’s really important that family carers are an essential and equal member of the care team. As Trevor said being constructive in feedback will be welcomed by those who want to provide quality care.

Be great to hear more about people’s experience of trying to live in their own home with support, or to not move into residential care. A recent IDEAL study found that only 50% of people living with dementia in the community had accessed any support. That paucity of support is what drives many to make a decision to move a loved one to a care home and could be avoided or delayed. Here’s a good practice example involving my mum and dad https://www.community-circles.co.uk/encircled-with-love/

We take so many calls from families who struggle to place a loved one in a care home, there are places until the words Lewy body dementia are mentioned as people with a diagnosis are seen to display 'challenging behaviour' this is because of a lack of awareness and understanding about the illness.

My mother in law was admitted during crisis and during covid and we live over 100 miles away most care homes would not accept her as they wanted her to self isolate.We did eventually find an emergency placement we did not tell her and arranged for her home carers to take her she walked through the doors with a bunch of flowers we told her she was going to a party.The care home were shocked at first but we asked them to go along with the story she walked through the doors and has never left. Her house has been sold and she has no idea.

CQC are "point" reports made for particular visits at particular times and do not reflect ongoing culture...

I read the current reports. The QCC have been visiting since this January.

There is an art to managing the care relationship with staff. I was reticent on some occasions to raise issues (despite trying to be constructive), in case staff "took it out" on my mum. On one occasion it was made clear to me that if at any point management felt my visits were unhelpful, they would have the power to stop me visiting. This was very distressing.

Gabby has raised an important point about services that help people affected by dementia in the community losing funding and closing, as has happened in many areas in recent years. Such services are often seen by health and social care as not important and yet they can help people develop their own peer support network and increase the time they can stay at home.

I realise there are some upsetting issues being discussed today. If you need any help or advice, the Alzheimer’s Society Dementia Connect support line is available on 0333 150 3456, or the Dementia UK helpline on 0800 888 6678. You can also seek support from Alzheimer’s Society’s Dementia Talking Point: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

It is important to live in the same world as the person with dementia. This is because what they believe at that point is real for them .It is important not to get in to argument with them.

My experience of the "Carers" attending my sister was dreadful and I am still battling with them regarding their fees. There were days they did not attend and the system they use is now electronic and can give false information. I had to stop them in the end. Better Carers are needed and should be trained properly to attend people with dementia but most seem to say they are but they aren't.

@ Jacqueline Cannon - I am looking after my wife who was diagnosed with behavioural variant Fronto Temporal Dementia (bvFTD), a rarer form of dementia at the age of 55. I have given up work to look after her and my caring role is a 24/7/365 and I often feel that I am looking after an errant 4 year old toddler with all the associated toileting issues. From my personal experience, it has become apparent that the Young Onset Dementia isn’t really recognised and supported with appropriate age related services. Perhaps it’s a minority but it must not be excluded.

Listening to the range of problems and experience has made me very sad. I cared for my husband at home for six years following his Alzheimers diagnosis. I had good ad hoc help from my village community, but felt that there was no structure to any other help available, although the Alzheimers’ Society have done their best to help. Since my husband’s daughter took up her Power of Attorney, I have become invisible, and could do nothing to prevent my husband from being admitted to a care home 40

On a more positive note, the staff also worked WITH me to enable my mum to attend a music concert (Daniel O'Donnell - she was a lifelong fan!). Which was much appreciated.

This is so true Gaye

A culture of compassion and care is essential with good leadership providing ongoing learning opportunities for all staff in any setting.

I agree totally Gaye..

Agree strongly with Gaye's points about decent pay and career structure - I think this needs to be actioned as soon as possible. It is a key factor in delivering quality care.

Totally agree Lorraine and Gaye.

One example of good care was shown in the two part documentary on BBC 2 "Inside the Care Crisis with Ed Balls"(still on iplayer)

we expect carers to give the love and care at a level we would ourselves and yet they are some of the lowest paid and least appreciated workforce .

We hear the same from medical students and DClin students unfortunately

Something I would like to be addressed is the difference in levels of staffing through the night. Fewer staff to support residents whose body clocks are upside down doesn't make sense to me.

Really good point Lorraine.

For those watching, how do you think social care professionals can help best support people with dementia to live their lives as fully and well as possible? Whether someone lives at home or in a care home.

Care in any setting needs to be seen as a profession with clear career progression and decent levels of pay, my dad is in a home and they have lost a really good career to be a takeaway delivery driver as it was a higher rate of pay.

From Ian again it seems this computer has a mind of its own The point about Rural dementia is :- lack of social and health care due travel distance and isolation. lack of Transport, lack of connectivity, rural poverty,high proportion of older adults (aged 50 plus)Fuel poverty, Lack of Broadband, Analog signal big switch off in 2025Poverty 980,000 households below the poverty line, Dementia in farmingClosing the Village shop/post office, A third of people living with dementia live on their own Shops and Pubs closing, These are the challenges, now some of the solutions working with the 10,000 Perish and Town councils in England who are keen to support a dementia friendly approach. The W.I ,N.A.L.C Community Farming Network, all keen to help

Good tip Trevor - love it!😊

Good quality care costs money. Cancer care has more allocated for support, care and research because there are more positive outcomes now. With no “cure” for dementia or chance of remission there is no good news outcome, the support is also needed sometimes for decades with an early onset diagnosis

This has also been captured in our research, staff just did not receive adequate support in providing adequate care during the pandemic https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-022-02822-0

Thanks Joanne. What benefits do you think that offers for your dad's care?

Thank you for your contributions and time. Is there a way to contribute to this discussion in addition to using chat. I would like to concentrate on listening to panellists during this session.

Thanks for that link Clarissa!

Out of people those who are aged over 65 living with dementia, 61 per cent live in the community in their own homes. The rest – 39 per cent – live in a care home (and as a result of Covid that balance may shift further still). I hope this inquiry will give equal attention to community based care and support as it develops.

Ian - really nice to read of the WI involvement!

That's what happened in the day centre. The staff found out what was their favourite song. They started to sing and the person with dementia joined in.

Family carers often need support/training in how to have their voice heard. Visit tide website to see free opportunities tide.uk.net

I think personal approach to each individual is paramount . the care home my father was in was extreamly good , caring, attentive however the level of staffing was not always great and supply staff are needed . I believe this is becoming worse. My father was 85 and hated bingo but loved scott Jopling and tom jones . Highly trained staff and enough staff will enable our loved ones to have the care they need .

We brought my mum to a community sing-a-long specifically for people with memory loss. Mum used to sing in a choir, and she really enjoyed it. The singing was a great uplift to us as her carers as well. Everybody in the room understood the dementia factor which meant we could relax.

'Playlist for list' is something that has been popular with many people here.

Music needs to be appropriate to the person a lot of staff in care homes think everyone was in the war and need to listen to songs from the 1940s

So true

Absolutely!

Yes, its only valuable if its person centred.

Thanks Julie!

Would have been great to hear from Gail about her own experience of support and hopes for the future. Hope future sessions will learn from people living with dementia about their own needs and aspirations when it comes to care and support. There are many people who can contribute to these discussions.

Sorry, Gaye’s own experience and aspirations.

Better continuous training, and a much more supportive infrastructure for the care workforce

At the end of her life, staff accommodated us having a Daniel O'Donnell karaoke session in Mum's room. Tea and cake was had! They kept our energy levels up with tea and cake, and I was able to spend her final night with her. We brought a reclining chair in, so I was able to hold her hand all night. All of that has been a great comfort to me since she died.

Life stories are essential! And they should not be a basic list kept in a file in the office!

My research suggested that enabling people with dementia to remain socially connected benefits them as well as their carers

Agreeing with Jean!

Absolutely, Jean.

From a community leader's point of view, having been working for the past 32 years with social workers and professionals, I would suggest the best result is when the care professionals to work collaboratively with the community, especially BAME communities, to co-design and co-produce Model of Care based on person centred services. This has been reflected by all members on the BAME Dementia WG which I chaired in Bristol. Members are care professionals and community leaders from BAME and LAs. Rosa Hui

That's a lovely example, Lorraine.

Tom, My dad is on a dedicated dementia wing and I just think it’s a real shame to have someone really good at their job of caring feel that they have to leave due to rates of pay. I have no complaints about the care my dad receives but we all know that there is a lack of people going into the care sector and staffing levels so if it was seen as a profession with clear progression it would not be a stop gap until something better came along

More dementia training is absolutely essential.

Excellently put Trevor

An excellent point, thank you, Joanne.

So true Trevor. In my experience, the best care for my mum came from a low paid carer but she had love for the residents and they responded well to her. she made them feel love and cared for.

I’m delivering training on life story work to family carers including the benefits of this for the person, the family carers and paid carer.

RE: 40s music and bingo - my partner's essential list (should he ever need residential care) includes good broadband as he's a gamer!!! He's also into drum and bass...…😎

We also need more Dementia Care Navigators, who are not qualified as nurses but can provide that crucial link contact from the moment of diagnosis, so that every single person with dementia and unpaid carer has one single person to contact and get info and support from

Yes Paul - where is the national health & social care strategy across all sectors?

OOOhhhh….I like the idea of Dementia Care Navigators Clarissa. Nice one!

You are so right Paul. Totally agree with what you say.

I totally agreed with more training should be given. However, training is also both ways. Professionals need to learn from grass roots service users as well as we need to learn from them. This is only way we could get best results for all concerned. Rosa Hui

Agree Paul,

They are highly effective in the Netherlands, let's bring more of them into all regions of the UK

Dementia has slipped down the agenda which is frightening. The new strategy needs to be innovative and funded.

That's a great point, thanks Rosa.

Dementia Together

https://www.dementia-together.com/

Many thanks, lovely to meet you all...

Just wanted to say thank you to all panellists and attendees. It has been overall a hopeful session, and I learned a lot.

Yes TU all!

Teaching assisants were given clear pay and career structures this made such a difference to their personal confidence and drive .

We at Plymouth University are currently developing and evaluating community dementia support workers based in primary care (D-PACT project) - investigating their value and connecting with community services. Grateful to hear further thoughts and experiences in our peer research group

How do we join

Thank you all - especially Paul, Trevor & Gaye

Thank you to all those attending. If you're not already signed up to the APPG mailing list, you can do so by emailing appg@alzheimers.org.uk

Thank you that was excellent

Thank you.