Dementia Guidance
For people 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 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 diagnosed.
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 they 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.
In the main, 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.
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.
From 01.04.2024 it is either (1)£72.65 or (2)£108.55 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 or Citizens Advice 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 receive Attendance Allowance, you might be entitled to 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 in 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 50,000 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 write to your MP using https://www.writetothem.com/ and ask them to support this petition https://hansard.parliament.uk/Commons/2022-06-16/debates/22061653000009/CouncilTaxDiscountsForDementia
Lone Pensioners Allowance. Applies in Northern Ireland
Pensioners in Northern Ireland aged 70 or over who live alone or with someone who has a severe mental impairment (Dementia) including their spouse or partner, may be entitled to 20 per cent discount on their rates. Guidance available on https://www.nidirect.gov.uk/articles/lone-pensioner-allowance
Carer’s Credit. Applies in England, Scotland and Wales
To get Carer’s Credit you must be aged 16 or over and under State Pension age and providing unpaid care for one or more people for a total of at least 20 hours a week
Carer's Credit is a National Insurance credit that helps with gaps in your National Insurance record, while it does not entitle you to any financial help now it can boost your pension in the future.
The person you’re looking after must get one of the following:
Disability Living Allowance care component at the middle or highest rate
Attendance Allowance
Constant Attendance Allowance
Personal Independence Payment daily living part
Armed Forces Independence Payment
Child Disability Payment (CDP) care component at the middle or highest rate
Adult Disability Payment daily living component at the standard or enhanced rate
Alternatively
If the person you’re caring for does not get one of these benefits, you may still be able to get Carer’s Credit. When you apply, fill in the ‘Care Certificate’ part of the application form and get a health or social care professional to sign it. By a health or social care professional they mean a person like a district nurse, occupational therapist,social worker, MIND case worker, or community psychiatric nurse.
Carers who do not qualify for Carer’s Allowance may qualify for Carer’s Credit.
Also you can still get Carer’s Credit even if you have breaks from caring (up to 12 weeks in a row).
To Claim go to https://www.gov.uk/carers-credit/eligibility
You can only claim Carer's Credit for the current and previous Tax Year, therefore it is important to claim as soon as you are entitled to.
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 under the "Pictures to Series" section. 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". The "Pictures to Series" books are sadly now out of print. Many libraries, however, will still have copies that they can lend out to people. You can visit or contact their local library to find out what resources they can offer to support people affected by dementia.
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 lose 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 Reduction for Disabilities
You may be eligible for the scheme if you live in a larger property than you would need if you or another occupant were not disabled.
If you live in England, Scotland and Wales you can apply to your local council for a council tax band reduction. 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. Guidance is available on:-
https://www.gov.uk/council-tax/discounts-for-disabled-people.
Together with a link to your council's application form
If you live in Northern Ireland and meet the conditions of the scheme for the Land and Property Services Disabled Persons Allowance you will get a 25% reduction in your domestic rates bill. Guidance available:-https://www.nidirect.gov.uk/articles/disabled-persons-allowance
You’ll have to show that you have either:
An extra bathroom, kitchen or other room that you need for the disabled person
Or an extra space inside the property for using a wheelchair
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.
Dental Care Services available if you can no longer attend your dental practice
Community Dental Care.
This is secondary dental care for patients who cannot be seen in general practice.
This covers a number of conditions including dementia.
Patients are seen at an NHS Hospital, specialist health centres or mobile clinics. Alternatively dentists working in the community come to your home to provide care.
Details of the local community dental service can be obtained from the the local primary care organisation (England), the local health board (Wales) the dental practice board (National Services Scotland) or the local trust (Northern Ireland).
Domiciliary Dental Care
This is where a general dental practitioner has an NHS contract to visit patients in their own home when they cannot visit the practice in person.
This is not available throughout the UK.
Residential Healthcare Funding
For care fees advice, there is a professional body called SOLLA, The Society of Later Life Advisers. The SOLLA website contains more detailed advice about individual situations together with a section to locate a local adviser.
Local Authority Financial Assessment
The means tested limit for capital is £23,250. So if a person has any capital of more than £23,250 they
have to pay for their own care.
Capital means property as well. There is an exception. If somebody else lives in the property, a spouse at any age, a relative who is over 60 or a disabled relative of an early age.
There are two means tested limits the second is £14,250. If someone has got between £14,250
and £23,250, then they will get some contribution from the local authority, but not a full contribution.
If a person is under the second means tested limit of £14,250, the council will pay what they call a "tariff". The "tariff" is the amount if the person was in their local authority owned residential care home. If the person's savings are below £14,250, they would qualify for the tariff amount which varies with each local authority. If the person wants to stay in a care home which is dearer than the tariff they cannot use their own £14,250 fund, it has to be funded by a third-party (family or friends)
NHS Continuing Healthcare Funding
NHS continuing healthcare is an ongoing package of health and social care that is arranged and funded solely by the NHS where an individual is found to have a primary health need. Such care is provided to an individual aged 18 or over to meet needs that have arisen as a result of disability, accident or illness.
NHS Continuing Healthcare pays for help and care at home or in a care home for people who need a lot of help because of their health. The NHS pays for this.
Firstly you need to ask your social worker, your family doctor, a nurse or another health worker like an occupational therapist to submit an NHS continuing healthcare checklist and then this will lead to an assessment by a multi disciplinary team.
The process is difficult to negotiate and is not particularly suited to people whose only medical condition is dementia.
Guidance is provided that sets out the principles and processes of the national framework for NHS continuing healthcare in https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care
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 a registration 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
LPA Online Summary
Lasting Power of Attorney Property and Financial Affairs.
With the requirement for Banks and other financial institutions to have sight of the original Lasting Power of Attorney and the number of High Street branches closing, The Office of Public Guardian have recently extended their scheme to obtain an online summary of the LPA for those registered after the 1st January 2016.
Banks etc. are not legally obliged to accept the online LPA but in many cases this may avoid having to travel to a branch with the documents.
To use the LPA online service go to www.gov.uk/use-lpa Once you have created an account by simply entering your email address and an 8 character password of your choice, you will be asked to insert the LPA reference and an “Activation Key”
For LPAs registered on or after 17th July 2020 the Activation Key will appear on the LPA documentation.
For all LPAs registered after 1st January 2016 an activation key can be requested by selecting the option to add an LPA to your account then select "No, I do not have an activation key". After completing your address details the activation key will then be posted to you.
NB An online LPA Health and Welfare can also be obtained by repeating the process of inserting the appropriate LPA case/reference number on your account, together with your name and address. This may be accepted by a hospital or GP.
* As at 01/04/2023
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 contact:-
Age UK (http://ageuk.org.uk ) who completed the attendance allowance and blue badge form for us.
Alzheimer's Society ( alzheimers.org.uk )
Alzheimer Scotland (alzscot.org) Scotland's Dementia Charity
Citizens Advice is an independent charity offering free advice and assistance in the completion and submission of both Attendance Allowance (AA) and Personal Independence Payment (PIP) application forms. Citizens Advice will, subject to staff availability, complete the form with you and advise you where and how to send it to the correct DWP department. They can also support you with benefits checks to see whether you could be entitled to any other help.You can contact Citizens Advice on their website www.citizensadvice.org.uk or by telephone for free in: England: 0800 144 8848, Northern Ireland 0800 915 4604, Scotland 0800 028 1456 or Wales 0800 702 2020.
Carers UK ( carersuk.org )
Dementia UK ( dementiauk.org ) Dementia UK is the specialist dementia nursing charity. Their nurses, known as Admiral Nurses, provide free, life-changing support and advice on a continuing basis to all those affected by dementia through their UK network of over 450 Admiral Nurses. Admiral Nurses are not available throughout the UK, however, the Dementia UK Helpline is available on 0800 888 6678 Monday to Friday 9am-9pm and Saturdays, Sundays and Bank Holidays 9am-5pm, except 25th December
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
Unfair Treatment Advice
If you feel that you have been unfairly treated in a shop, cafe or restaurant because you have dementia contact:-
Equality Advisory Support Service (EASS)
This is a free service that advises and assists individuals on issues relating to equality and human rights, across England, Scotland and Wales. EASS provides information and advice on Discrimination and Human Rights and is not a legal advice service. The EASS provides information about the Equality Act 2010 and the Human Rights Act 1998. They recommend you consult a lawyer if you want legal advice, wish to take legal action or want advice on the merits of your case.
The advice line is available on Freephone 0808 800 0082 Monday to Friday 9;00am to 7:00pm and Saturday 10:00am to 2:00pm.
Alternatively use the contact form https://www.equalityadvisoryservice.com/app/ask
If unfortunately you find that you need to complain about the NHS or if you find it difficult to understand your care and support or find it hard to speak up, there are people who can act as a spokesperson for you.
The Independent Heath Complaints Advocacy Service can help individuals make a complaint about a National Health Service (NHS), which covers all NHS funded treatment, this includes NHS hospitals, GP's, Ambulance Services, District Nurses, Mental Health Services, Dentists, Pharmacists or Opticians.
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 2025 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 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, request 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.
On the 29th March 2022, because of the problems raised above, BT paused the changeover to the new VoIP phones. On 8th March 2023 BT restarted the rollout.
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
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