Dementia Guidance
For people over 65 diagnosed with dementia 
Their friends and family

What is Dementia Guidance?

Dementia Guidance provides a guide to free services available throughout the UK to people with dementia and their families. 


My wife was diagnosed with dementia in early 2018 and since then I have come across benefits and services that are available without any cost being involved. 

Even though you are faced with the life changing diagnosis of dementia, there is no method of automatically telling you about these services.

In our own case we have found them out merely by chance.
 

I have included one or two suggestions that involve some cost but I would strongly advise you consider them. 

 

The purpose of this internet site is to provide you with a short list of suggestions to put you on the right track.

There are several fantastic charities who have plenty of good advice and offer tremendous services but I simply wanted to put together a brief guide based on our own experience. 


There are a number of broad groups of suggestions I would guide you towards:- 

1. Free benefits available to everyone over 65 with dementia whatever your income. 

2. Registering power of attorney, there are two to consider and they are chargeable, 
     but I would suggest they are essential as soon as the person is diagnosis. 

3. Free advice from charities. 

4. Advisory and social groups for the person with dementia and their carers 
    and separate groups for carers only. (you may have to pay for a cup of tea or coffee)

5. Respite Care. One essential aspect is that if someone is caring for their partner or friend they must make time for themselves, otherwise both them and the person with dementia will suffer. 

6. Contingency Plans. Just in case you as the carer have an accident, major or minor you need to have set in place contact and care details should either the emergency services or your friends and family need to take over for a while.

 1. Free benefits available to everyone with dementia whatever their income. 

I have deliberately not included any income related or means tested benefits as these will be personal to your own circumstances and require specialist knowledge and advice. 



Attendance Allowance(applies to England, Scotland and Wales) 

It is a non contributory benefit available to people with dementia over pensionable age, 6 months after they start to require another person to provide day or night time attention to their bodily or safety needs.
  
Despite the name this is not to pay for someone to be in attendance it is paid directly to the person with dementia whatever their circumstance and can be used for anything they choose, be it taxi fares, a gardener or the occasional meal out. 

Presently it is either (1)£61.85* or (2)£92.40* per week depending on whether the person needs assistance (1) during the day or night or (2) both day and night. The form is 31 pages long with some 52 questions. 

There is no requirement for a formal diagnosis. 

The form can be found on the GOV.UK site under Attendance Allowance claim form.

Personally I would not recommend tackling this yourself there are charities out there to help, some can do most of it over the phone. A local Age UK may be able to help complete an application. 

DO NOT BE PUT OFF BY THE FORM AS THIS CAN LEAD TO OTHER BENEFITS LIKE:- 

If you get Attendance Allowance, you might be able to get some other benefits, or an increase in benefits, including: Pension Credit, Housing Benefit, Council Tax Reduction. You may also be entitled to: Help with NHS health costs, Cold weather payments, Winter Fuel payment

Council Tax Discount. Applies to England Scotland and Wales.

Once you obtain Attendance Allowance you can immediately apply for a 25% council tax discount if there are only two people in the house or 100% exemption if the person with dementia lives alone. 
These are simple forms but needs signing by your GP or another registered medial practitioner. 

Forms can be found either on your local council internet site or by telephoning your local council and asking for the "Council Tax Discount SMI Disregard" form or the "Council Tax Exemption" form.

There are more that one million people in the UK with Dementia yet only 25,000 receive their full entitlement to Council Tax Discount because their councils hold back for as much as 6 years on discounts ranging from £200 to £10,400. This is because of the way the present laws are worded. If you want to help and I am sure you will, please sign the petition https://petition.parliament.uk/petitions/614616 and ask your MP to push for a change in the laws.

April 2022 Energy Rebate 

The April 2022 Energy Rebate of £150 on Council Tax Bills will still be paid to people with Dementia even if they are Class “U”exempt from paying Council Tax See 11 (iii) and 12 in https://www.gov.uk/government/publications/the-council-tax-rebate-2022-23-billing-authority-guidance/support-for-energy-bills-the-council-tax-rebate-2022-23-billing-authority-guidance 

 
Blue Parking Badge

You may also be able to apply for a blue parking badge for use when you are driving with the person with dementia. Again the charity who sorts out the Attendance Allowance may be able to sort it out at the same time. 

 (blue) RADAR Key

You may have a need for a (blue) RADAR key that opens over 10,000 locked public disabled toilet. There is usually a small charge of around £6* and they can be obtained through most dementia charities. 

One simple way to get a RADAR Disabled toilet key is to go to the blue badge company

Free Library Books designed Specially to share with People with Dementia

There is a series of 15 books designed to help people with Dementia and their carers share past experiences. Your local library can loan them to you free of charge. There is no limit to the time that you can borrow the books and there will not be any penalties if they are returned with any accidental damage.

The library can obtain and loan them under the "Reading Well for Mental Health Scheme" and the books can be viewed on the link:- https://www.picturestoshare.co.uk/shop 

Incontinence

You may need to deal with incontinence. 

NHS trusts provide a variable range of Continence Services that can be contacted either directly or through your GP. All offer friendly advice to help with what is probably inevitable as the dementia progresses. Services vary from advice to free supplies of pads. 

Personally I would advise that you to fit a waterproof mattress protector together with an absorbent "kylie" bed pad under your bottom sheet in preparation. 

Showering

As people develop dementia they often resist getting into a shower or bath, my suggestion is to investigate hand grabs which can have suction pads or be fitted permanently.

The suction pad versions vary in size to suit the size of bathroom tiles, I would recommend that the suction type, which I found perfect, should be removed after each use because they may loose their suction with water seepage. 

VAT Relief

VAT relief may be available when buying goods and services that are "designed solely for disabled people", however in the case of say a shower HMRC accept that the shower will also be used by other members of the household and their advice is to complete the eligibility declaration form that is on their internet site and speak to your supplier/installer.

To qualify the person is required to have "physical or mental impairment which has a long term and substantial adverse effect on your ability to carry out everyday activities"

To show entitlement to buy any goods VAT-free, your supplier may ask for a written declaration stating eligibility.

There is no facility for HMRC to refund VAT to you if you are entitled to buy VAT-free goods. 

You should discuss this with your supplier before you purchase to establish whether they will charge VAT. National Chains may deal with VAT centrally and you may have to initially pay the VAT and claim it back from the supplier after the work is completed. 

Guidance is available on:-
 https://www.gov.uk/guidance/vat-relief-on-certain-goods-if-you-have-a-disability
Or telephone HMRC  on 0300 123  1073  phone lines open  Monday to Friday: 8.30am to 5.30pm

Council Tax Band Reduction for Disabilities

If you have modifications to your house completed to accommodate the needs of someone within the household who has a disability you can apply to your local council for a council tax band reduction.

If you qualify, your bill will be reduced to the next lowest Council Tax band. 
For example, if your property is in Band D, you will pay the Band C rate. 

If your home is already in the lowest band (Band A), you will get a 17% discount on your Council Tax bill instead. 

You will have to show that you have one or more of the following reasons for your application:-

(i) A room which is predominately used by and required for meeting the needs of the disabled person.
(ii)A second bathroom or kitchen required for meeting the needs of the disabled person.
(iii)A wheelchair used indoors by the disabled person.

The property must be the main home of at least 1 disabled person. 
This can be an adult or a child - it does not have to be the person responsible for paying the Council Tax.

Guidance is available on:- 
https://www.gov.uk/council-tax/discounts-for-disabled-people.
Together with a link to your council's application form 
 https://petition.parliament.uk/petitions/614616

*As at 01/04/2022

2. Registering Lasting Power Of Attorney             (LPA) 
If they were registered before 2007 they were called Enduring Power of Attorney (EPA) 

The person with dementia will gradually lose their ability to manage their finances and potentially their healthcare. 

It is a horrible task to decide if it is necessary, but the sooner it is done the better. 

The person with dementia needs to approve and sign the form so it is essential to broach the subject well before they lose the power to understand and as in our case physically sign the form. 

There are two types:- "Lasting Power of Attorney (property and financial affairs) 
and Lasting Power of Attorney (health and welfare) 

If you feel up to it, most of it can be filled in on the GOV.UK internet site before you print it off then the forms just need signing and witnessing. 

If you do it yourself there is an application fee of £82* each, but people often choose to do it through their solicitor who will naturally charge an additional fee. 

I WOULD STRONGLY RECOMMEND YOU LOOK INTO THIS AS SOON AS YOU FEEL ABLE. https://www.gov.uk/power-of-attorney

* As at 01/04/2022

3. Free Advice From Charities

There are many national, regional and local charities that offer much more advice than I am suggesting, with years of experience far superior to anything I can offer.
Contact them or look on their website, there is plenty of really good advice out there.

Personally I would suggest you start with:-

Age UK  (http://ageuk.org.uk ) who completed the attendance allowance and blue badge form for us.

Alzheimer's Society ( alzheimers.org.uk )

Dementia UK ( dementiauk.org )

Carers UK   ( carersuk.org  )

Your County Council and Local Council will also be able to guide you towards charities in your area.

For Dementia Charities and services local to you simply search (on Google):-

Local dementia charities near me, or

Local dementia services near me

 

4. Advisory and social meetings
For the person with dementia and their carers and separate meetings for carers only. 

There are lots of groups around the country that meet socially exchanging experiences and knowledge either through simply chatting round a cup of tea or occasionally talking on a particular subject of interest to everyone there. 

For me, as a full time carer, the "carers only" group stands out.

Carers groups are where you can share your own experiences, challenges and occasionally your deepest thoughts in a confidential and safe environment.

Not to mention those little and often not so little gems of information.

One National Carers Group that meets regularly is Dementia Club UK

5. Respite Care. 
One essential aspect of dementia is that if someone is caring for their partner or friend they must make time for themselves, otherwise both them and the person with dementia will inevitably suffer. 

I cannot overstate the need for respite for carers themselves. Time to catch up on some things but more importantly time to relax, to do the spoily things that you miss so much or simply have a break relying on someone else to look after the person with dementia.

There are charities where a trained and vetted volunteer will come to your home and sit with the person.

Or perhaps take them out for an hour or two, just the two of them to a garden center of cafe or perhaps to a group of people with similar conditions which in our case was singing. Singing is often suggested because as well as joining in a group or simply listening to music helps with both social and mental stimulation.

 

Several Charities and Local Councils run Day-Care Centres where the person with dementia can get a change of company and often activities (and lunch) while carers can have half or a full day of respite. Search locally, some are paid for and some are free. 

6. Contingency Plan
Just in case you as the carer have an accident, major or minor you need to have set in place contact and care details should either the emergency services or your friends and family need to take over for a while.

There are some things you need to think about, who can help 

In the short term if you need to go to the hospital for 2 to 4 hours.

In the medium term for 2 to 4 days

In the longer term for several weeks or months.

And where are the contact details for these people and do they all know each others details.

 

The Red Emergency Folder with the persons care needs, medication and social preferences. Placed in a prominent position for the emergency services. Some health regions do different colored folders but the principle is the same.

 

The Lions Message in a Bottle Scheme  is a simple idea that encourages people to keep their basic personal and medical details in a common place where they can easily be found in an emergency. 

The information is kept in a bottle. The bottle is kept in the fridge, where the emergency services will expect to find it in the event of being called to your home.

They will know you have a bottle by a label. One on the fridge door and one on the inside of your front door.

The Lions Club British Isles Lionsclubs.co.uk supply the bottles free of charge to individuals and is supported by the following services:Ambulance Police Fire & Rescue, Emergency Doctors Primary Care Trusts.

Contact your local Lions Club or telephone Lions Clubs Head Quarters on 0345 833 9502, alternatively order a Message in a Bottle by emailing email:mdhq@lionsclubs.co.uk 

 

Write down your details.

Whether it is in the Red Emergency Folder or in the Lions Message in a Bottle.

The Lions club list is a great guide to what to include:

• Your full name and brief physical description

• Your doctorʼs name, Surgery address and telephone number

• A brief description of any medical conditions you are suffering from

• Allergies and allergic reaction to medication

• Location of your medication in your home

• The names, addresses and phone numbers of two people who may be contacted in      any emergency

• Details of any pets that may be on the premises

They also advise that you keep your repeat prescription list with your medication, this is of great help to paramedics.

 

Complete THE HERBERT PROTOCOL.

This is an Adult at risk profile containing information intended to assist care workers , partner agencies and the police if the person it refers to goes missing.

It is very comprehensive as it includes a photograph as well as GP's contact details, Medical Information, any particular phobias, places they may go, jobs, interest and hobbies, weekly habits, travel, their daily routines and primary contacts.

Details can be filled in online or can be downloaded and filled in by hand. Completing the online version allows it to be distributed (emailed) to selected people you would want to be made aware should the person go missing.

It is just a 20 minute job and I think that it is very important that it is done before the need arises. 

 

Fire & Rescue Services

Fire & Rescue Services throughout the UK offer Free Home Safety Checks. As part of the service they check any smoke alarms currently installed and offer advice on fitting smoke alarms to ensure an effective early warning of a developing fire.

 

Register with your utilities Priority Service Register.

Contact your:-

Gas Supplier and Gas distribution services (0800 111 999)

Electricity Supplier (Tel. 105) and the Power Grid Priority Service (0800 169 2996)

Water Company

Telephone Company (Register with BT via the "BT Inclusion Team" 0800 919 591)

 

Telephone changes presently taking place throughout the country

Please take time to read this as the changes that are coming may stop you calling emergency services.

If you or someone you care for is likely to be confused by new technology:-

Register yours or their needs with their landline telephone provider NOW.

If the person is not registered they could be changed over at any time.

My Wife has Alzheimer’s Disease and I thought we were registered, but I was wrong and we were changed over to the new system on the 8th November 2021 and we were left without any landline phone.

If you have previously registered with the landline telephone service provider’s Priority Service, check as this may have been deleted from their records following the introduction of the new Data Protection Act 2018. 

If you register with their telephone service provider this should avoid being changed over before 2023 and without taking into account any needs. 

BT Openreach, which manages the UK's 14 Million phone and internet network, is retiring the Public Switched Telephone Network (copper wired telephone lines) by 31 December 2025. That means home phone (landline) providers, such as BT, Sky and Virgin Media O2 are now moving customers to a digital technology known as “Voice over Internet Protocol” (VoIP), which carries calls over a broadband connection. 

Telephone service providers are required to give 1 month’s notice to everyone before their telephone system is changed to VoIP. Unfortunately the notice can appear to be a “standard letter”

If you are registered with BT for your landline, BT has a special Inclusion & Dementia Team on 0800 919 591 to help smooth the process.

If you have a single telephone adjacent to a modem, on the changeover day simply plug it into the back of the modem but there is nothing to do until the changeover day.

If you have your phone plugged into a remote socket elsewhere in the house, or only have a cordless landline phone, they will stop working with VoIP so as soon as you receive the notification letter, people or carers should:-

1. Ask for 1or 2 free Voice over Internet Protocol (VoIP) phones.

2. Or ask for a free adapter that allows you to continue to use one existing corded phone. Existing cordless phones connected to the electricity will no longer work in remote telephone sockets.

3. If you are in an area prone to electricity power cuts:-

If you are with BT ask for a Free Battery Back Up unit for the Modem/Hub. 

This will allow the modem to continue to work for at least one hour following a power cut. 

The new VoIP phones have a battery that can continue to work for up to 12 hours.

In a power cut, charged mobile phones and laptop computers will continue to work but after 1 hour they may have to rely on an alternative Wi-Fi signal.

4. If you are with BT, ask the BT Inclusion & Dementia Team for a Free Priority Fault Repair application form. The form needs countersigning by a doctor or consultant which may incur a charge. The form is also available at:- www.bt.com/content/dam/bt/help/including-you/BT_Free_Priority_Fault_Repair.pdf

5. Any existing landline only customers with BT that are changed over to Digital Voice (VoIP) will be provided with a Free Smart Hub 2 (modem) and they will not pay a monthly rental for this Smart Hub 2. Those customers will not have broadband and all the other services that come with the chargeable service such as BT Wi-Fi and BT Cloud.

6. Other landline service providers may have different policies which you need to check.

As of the 29th March 2022, because of the problems raised above, BT have now paused the changeover to the new VoIP phones. Here is the link to the explanatory blog released by BT We’re pausing our Digital Voice plans for Consumers, while we work on a more resilient rollout (bt.com)

 

Pack Your Bags

Pack a bag each just in case either or both of you need to go into hospital even for just one night. Now is the time to do it because when you need it most you will have enough on your mind. Don't forget to tell others where the bags are.

Put in the bag the obvious but while you can think about it make sure you add something that will remind you both of home.

Pyjamas

Knickers or underpants

Tooth Brush and toothpaste

Slippers

That spare pair of glasses

A photo of the pair of you and that little something to remind you of home, a favorite soft toy, something you cherish but can be replaced

A little cash, just enough for a newspaper or a treat, not much in case it gets lost

Don't forget a list of phone numbers and a list of medications, simply the same as you have in your Red Emergency Folder or your Lions Message in a Bottle.

 

If you have any questions or suggestions please feel free to email me on:-   contact@dementiaguidance.co.uk