Horsham District Older Peoples Forum

This is the page for information on Dementia

More information will be added as we become aware of it. If you or your organisation or group has information or events that can be included here then please send it in. Please also look at our website Links page. Horsham District Older Peoples Forum is a member of the Horsham District Dementia Action Alliance and attends their meetings.

The difficulties of looking after someone with dementia and the problems around the NHS 'Care package' system has been discussed at the Horsham District Older Peoples Forum public meetings.  Attending meetings is free and open to anyone aged 60 or above or who cares for someone who is.

If you have experiences or information you wish to share please email hdopforum@gmail.com and if you can, do come along to our public meetings. 


What benefits are available for Dementia care?


Carers Support March 2020 Newsletter


Carers Support West Sussex (CSWS) is an independent charity, working in close partnership with West Sussex County Council and the NHS to identify and offer support to unpaid family and friend Carers across the county.

We support registered carers across West Sussex:

·       Providing more than 50 monthly carers groups addressing a wide range of caring situations

·       Our Carer Learning and Wellbeing programme provides free courses such as Coping with Caring

·       Counselling

·       Carer Equipment Service to support those in a caring role

·       Carer Health and Wellbeing Fund

·       Signposting to relevant services and organisations.  

CSWS has a dedicated dementia team whose primary role is to support someone looking after a family member or friend with dementia who could not manage without their help. 

We send out a monthly free e-newsletter with details of our groups and other news of interest to those caring for someone with dementia.

To find out more or to register as a Carer call our Carer Response line on 0300 028 8888.

Email info@carerssupport.org.uk or visit carerssupport.org.uk


Admiral nurses
Carers Support West Sussex dementia team works with Admiral nurses, who specialise in dementia, referring carers and those they care for in the north of the county. But did you know that you can call the Admiral Nurse helpline free wherever you are and talk to a nurse? 

The Admiral Nurse Dementia Helpline is on 0800 888 6678 and available from 9am-9pm Monday to Friday and from 9am-5pm weekends. Find out more on their website here. 


Music for Dementia 2020



Practical Advice and Support Community - Unforgettable.Org


Technology can help us fight dementia Telegraph 11th February 2020

Smartwatch will monitor for early signs of dementia Times 11th February 2020

Care help denied to 700,000 elderly in system 'under siege'  Times 7th February 2020

Thousands with dementia being dumped in A&E wards every day Telegraph 22nd January 2020

Families sending relatives with dementia to Thailand for care Guardian 12th January 2020

Trials shine light on hopes for Alzheimer's disease cure Telegraph 6th January 2020

Lets cherish, not fear, those with dementia Times 31st December 2019

Dementia rates falling since leaded petrol ban Times 19th December 2019

How good night's sleep can brainwash away dementia Times 1st November 2019

Families face long trips to see relatives in care crisis Sunday Telegraph 13th October 2019

Use horse sense to rein in the strain of care Times 25th August 2019

Dementia accounts for one in eight deaths Times 7th August 2019

What friends are for: socialising at 60 can stave off dementia Times 3rd August 2019

Alzheimer's diagnosis: new blood test can detect disease Times 2nd August 2019

Charges are a 'stealth tax on those unlucky to need care' Sunday Telegraph 21st July 2019

Council 'mislead' families over the care they are entitled to Sunday Telegraph 14th July 2019

Dementia breakthrough as new disease type identified Times 1st May 2019

Council cutbacks blamed as Four Seasons Care collapses Times 1st May 2019

Losing sense of small can be fatal sign Times 30th April 2019

Disabled pensioners hit with huge bills in care crackdown Telegraph 28th February 2019

A new offer for carers of people with dementia and frailty supported by West Sussex County Council

Three local charities, Age UK Horsham District, Impact initiatives and Coastal West Sussex Mind have come together as Horsham District Carers Partnership (HDCP). Together they plan to support a minimum of 72 carers of people living with dementia and/or frailty who are resident in Horsham District every year. 

They will do this through the delivery of up to 22,000 respite hours per annum from three location-based Meeting Centres offering regular programmes of activities for carers and cared for.

 The three location-based meeting centres will cover:·    

     the north of the District – offering 12 away from home respite places in Horsham (3,500 respite hours per annum);·      

   the south of the District offering 36 away from home respite places in Henfield (11,000 respite hours per annum); ·    

     the east of the District offering 24 away from home respite places in Storrington (7,500 respite hours  per annum) 

In addition, the new partnership will offer a bespoke carer respite service giving the carer and “cared for” an opportunity to socialise together.

 Our partner Coastal West Sussex Mind will offer opportunities for carers and “cared for” to join in with informal and ad-hoc social and well-being activities. We anticipate that this aspect of the service will be offered to carers and “cared for” for 2-3 hours per session. This service will be co-located at the new Chanctonbury Hub.

 Finally, the partnership will provide a series of one-off events (seasonal and/or campaign/information based) for the carer and “cared for”. For example Christmas Day at the Haven.

 Contact us: On 01403 260560 for more information or to book an assessment and a FREE taster session


Heathrow Airport Assistance

At Heathrow we understand all passengers are unique and we offer different levels of support tailored to your needs. For a hidden disability such as autism, dementia or anxiety, help is always at hand at the airport. If you would like to book assistance just let your airline know 48 hours in advance and our specially-trained staff will take care of you.

Sunflower lanyards

Wearing a sunflower lanyard at Heathrow enables our colleagues to recognise that you have a hidden disability without you needing to declare it. This allows you to travel independently through the airport whilst knowing that if you need any additional support during your journey, any of our colleagues will be able to support. 

If you do find you are feeling any discomfort during your journey or would prefer extra assistance, head to one of our Assistance desks where one of our colleagues will be happy to help.

How to receive a sunflower lanyard

If you are travelling through Heathrow within the next six months, we would be happy to post you a lanyard wherever you are in the world.

For more information on Sunflower lanyards and assistance at Heathrow Airport click here


Dementia Friendly film screenings at The Capitol Theatre

Stan and Ollie (PG) was shown in January 2019

For your convenience, tickets at £7 each (including a cup of tea or coffee after the screening) can be booked in advance online or via the Capitol Box Office but seating is unallocated to provide the freedom to move around the cinema. More details here

Dementia & Alzheimer's behind 1 in 8 deaths Times 24th October 2018

The social care crisis is about more than money Times 3rd October 2018


Carers Health Scheme - information

Short Video here

Are you looking after family or friends who are ill, frail or have another health concern?

Do you feel the caring role is impacting on your own health and wellbeing?

The Carers Health Team can offer professional support and guidance to maintain your own health and wellbeing.

Are you aged over 18 and caring for a relative, partner, friend or neighbour who is ill, frail, disabled or has mental health or substance misuse problems?

Are you having dif´Čüculty with maintaining your own health & wellbeing in order to cope with the demands of your daily routine? 

Maybe you don’t have time to visit your GP surgery for a general check up?

Our carers health team can visit you at home and check your general state of health and wellbeing. We can offer advice about how to keep healthy and manage any health issues you might have.

Who we are

We are a free service provided by Sussex Community NHS Foundation Trust for informal carers over the age of 18 registered with a West Sussex GP.

Our aim is to improve both your own health and the health of the person you are looking after.

Our service is staffed by trained health care professionals who can provide you with advice and information to help you in your caring role. 

What does the service do?

We work closely with other NHS specialist services, social and caring services as well as many other voluntary and community services

Our Carer Health Clinicians will work in partnership with you to provide personalised one to one advice and information. This could include:
• Practical advice and training to help you in your caring role, such as safe moving and handling techniques and managing medication.
• Information and advice on other services to help you in your caring role and
lead a healthier lifestyle.
• Advice and information to help you plan for the future and guide you through the complex health and social care system.

• Referral for health screening/NHS health check.

How to get in touch
Please contact us if you have any questions or think our service may be of use to you.  
We are open from 8am to 6pm, Monday to Friday (except on bank holidays). If you call outside our opening times, please leave a message on the answerphone and we will call you back as soon  as we can. We cover all areas of West Sussex.
Contact us
Phone: 01243 623521
Fax: 01243 623522
Email: SC-TR.carerwellbeing@nhs.net

Alzheimers Society - Living with dementia magazine 

Future Learn  - 
free online learning courses in many categories including health & mental health. See or example 'Creating moments of joy for people with Alzheimer's' 

My Care Matters

Thank you for your interest in Mycarematters at the HDOPF meeting in Colgate recently (29th August 2018), and for requesting further information. 

As you may remember, it all started when my late husband had to move to a care home for what turned out to be the final 13 months of his life. He had advanced dementia, was unable to communicate in the conventional sense and needed help to wash, dress and eat.

 I created a wall chart to share with staff the things I knew he'd have talked about if he'd been able, and variations of that original chart have since been adopted by over 1,200 care homes across the UK. When hospitals started to use them, I realised how important it was to have access to someone's needs and preferences without delay. 

So I created Mycarematters, an online tool where people can create a profile of the information they want healthcare professionals to know in advance of a hospital stay. 

We ask hospitals using Mycarematters to provide a way of displaying a person's Mycarematters profile behind their bed, and we provide blank charts for those people who do not wish to or are unable to use the Internet. The idea is that the information, short enough to be read at a glance, is available to everyone interacting with the patient. 

We're now working with hospitals and carers groups in five counties, and we're also doing some exciting work exploring how Mycarematters can help kickstart those difficult conversations around Advanced Care Planning and end-of-life wishes.

 I invite you to create a Mycarematters profile for yourself or a relative - it's free and very easy to use, just click on the link below. Meanwhile, please spread the word!  Anyone at risk of a hospital stay and potentially unable to communicate should have a Mycarematters profile in place, and any hospital wishing to provide dignified and person-centred care should be encouraged to adopt the Mycarematters System.

 With kind regards, Zoe Harris Founder / CEO Mycarematters


Do you or someone you know with dementia receive nuisance and scam calls? If so you can apply for free call blockers at www.friendsagainstscams.org.uk/callblocker

Call blockers - free for dementia sufferers

K2 Crawley offer a range of dementia-friendly water-based activities tailored to the individual (some people like to do aqua-fit, others swim lanes and some just like to play), people travel from East Grinstead and Surrey to use the service, it is not limited to those residents in Crawley. The scheme is supported by the Amateur Swimming Association and forms part of a study into the effects of swimming on people with dementia. I'm also able to direct to other local 50+ activities.

The scheme involves six free sessions in which we establish a pool routine, register the individual as a (reduced rate pay as you go) member and collect some information for the study, a carer (or two if needed) always goes free. To register someone I need their name, address and date of birth and/or the contact details of them/their carer as appropriate.

I can also come out to active life/well being events where appropriate with or without pool equipment to stimulate - so if there's a group you think might have a swimmer or two that could be persuaded into the water do let me know. 

Flick McLuckie

K2 Dementia Friendly Swimming Co-ordinator

Dementia Friendly Horsham

Support for families facing dementia - Dementia UK   Helpline 0800 888 6678

Age UK Horsham - dementia clubs  Please see the separate Age UK page

Alzheimer's Society        National Dementia Helpline 0300 222 1122

Carers Support West Sussex  Helpline 0300 028 8888 Monday - Friday  9-5,  Wed 9-7pm

Action on Elder Abuse - confidential helpline 0808 808 8141

Contact the Elderly Supported by a network of volunteers, Contact the Elderly organises monthly Sunday afternoon tea parties for small groups of older people aged 75 and over, who live alone, offering a regular and vital friendship link every month. 0800 716 543

Community Link Alarms

Dementia Adventure - holidays for people living with dementia and their carers

Make your home dementia friendly

National Framework for NHS continuing healthcare and NHS funded nursing care

Newspaper articles (see also Newspaper articles page)

Dementia patients to be prescribed smart home kit Times 17th April 2019

Interview with Wendy Mitchell, author, how she copes with Alzheimer's 

Sunday Times 10th March 2019

Dementia patients 'needlessly sectioned' Times 4th December 2018

Dementia & Alzheimer's behind 1 in 8 deaths Times 24th October 2018

The social care crisis is about more than money Times 3rd October 2018

Dementia patients charged 40% more for care Times 1st October 2018

Exercise for 2 minutes a week to cut dementia risk Times 25th September 2018

Dementia care by strangers for the millions who fail to prepare Times 30th June 2018

'Every song brings him alive' Telegraph 27th April 2018

'Alzheimer's will be treated like HIV' predicts Nobel prize scientist Times 7th March 2018

Son's thanks for job at Sainsbury's that helped his mum cope with dementia Times 6th March 2018

Search for Alzheimer's drug flounders Times 13th January 2018

Pfizer gives up on dementia research Times 9th January 2018

We'll pay dearly for ignoring social care Times 13th December 2017

Dementia will 'overwhelm healthcare' Times 8th December 2017

Families left 'in crisis' by cuts to dementia nurses Times 12th September 2017

Spending time with toddlers helps elderly fight dementia Times 30th July 2017

Care homes demand top up fees from families Times 27th July 2017

Families asked to feed dementia patients Times 22nd July 2017

Elderly care homes that charge the deceased Sunday Telegraph 18th June 2017

Care homes forcing elderly residents to pay thousands in stealth fees Times 15th June 17

Number of pensioners who need care to rise by 25% Times 24th May 2017

Fit dementia sufferers with GPS trackers Telegraph 24th May 2017

Learn a language to delay dementia  Sunday Times 23rd April 2017

The gift that can lock you out of your care home Sunday Times 16th April 2017

Advisors tout their wares to dementia sufferers Sunday Times 5th March 2017

Cash strapped Japanese abandon senile parents The Times 28th January 2017

Cameron calls for more spending on dementia research The Times 25th January 2017

Care homes under pressure as costs soar The Times 12th October 2016

Care crisis as struggling nursing homes are forced to shut The Telegraph 12th October 2016

NHS care complaints double Sunday Times 9th October 2016

'Victory for Vicki - and a cheque for £94,000 - woman with dementia wins 2 year funding battle with NHS - Sunday Times 2nd October 2016

'We had no choice' number of elderly filial carers on rise in UK The Guardian 2nd October 2016

Woman's way with words could mask early signs of dementia  Times 6th October 2016

Unforgettable - Website with advice, services and products with regards dementia including Lasting Powers of Attorney

 email: horshamolderpeoplesforum@gmail.com
Twitter @hdopf

© Horsham District Older Peoples Forum 2018

Community Web Kit provided free by BT