In this 10,000 word article we share with you a whole range of tips of advice to help those living with dementia, whether that be you or a loved one.
Topic 1 – Mental Health & Wellbeing
Topic 2 – Keeping Fit, Healthy and Well
Topic 3 – In the Home, including the use of dementia aids
Topic 4 – Out and About
Topic 5 – Legal Matters You Should Consider
Topic 6 – Financial Matters You Should Consider
Topic 7 – Care and Support
Topic 8 – Advice for Carers, Family and Friends
We’d like to start this article by dispelling a few key myths about Dementia.
Contrary to popular belief, Dementia is not a singular illness. It’s a condition, caused by lots of different diseases. ‘Dementia’ is the collective term for the symptoms of these illnesses. The most common forms of dementia are Vascular Dementia, Lewy Body Dementia and Frontotemporal Dementia.
Dementia isn’t a normal part of the ageing process. Although the likelihood of developing Dementia rises with age, it also affects many people under the age of 65.
Dementia affects people in a variety of ways – which all differ of course from person to person. Everybody experiences Dementia differently, and may have one symptom or many in varying degrees.
It’s still possible to live a healthy, happy, independent life with Dementia.
This fourth and final fact is what this article is all about. People with Dementia can – and do – continue to live their lives to the full, even as the condition progresses. But living well is only possible with the right tools, support and advice.
It’s estimated that Dementia now affects 850,000 people in the UK alone each year and over 5 million in the USA.
Dementia can be a frightening, isolating and devastating condition – but it doesn’t have to be. With the right support and information, life can be a lot less challenging for people facing a diagnosis.
This easy to digest, comprehensive guide, has been specially designed to provide simple advice and guidance to individuals living with Dementia and their families.
In this article you’ll find information on every aspect of the condition, clearly divided into handy individual tips to take away and use in your daily life.
We’ve designed this article so that it’s easy to dip in and out of when you need to refer back to it for information. Therefore the support provided in this article is broken down into eight topics with different themes – from Care and Support to Legal Matters. In each area you’ll find helpful tips and advice relating to key issues affecting individuals with Dementia.
If you need further information or advice, there’s a useful list of additional resources included at the end of the article – and plenty of advice and tips can be found on our website.
Positive mental health and wellbeing is essential for individuals with Dementia. Due to the nature of the condition, it’s naturally very important to look after mental health. Doing so can alleviate the symptoms of Dementia and help you to live better with it – as well as reducing the possibility of further illness. In this chapter we share some tips to help you to protect and improve your mental health and wellbeing.
A simple to follow yet firm daily and weekly routine can be really helpful for people with Dementia. This could include set mealtimes, time for a walk and a few hours allocated to your favourite hobby. Keeping to these regular times should help you to remember what you are doing each day a little better.
A clock that features the day, date and the time in large figures is handy, as you’ll be able to keep track throughout the day and refer back to your routine if needed. You can read more about the benefits of a dementia clock in our article here.
To do lists, calendars, weekly planners and even reminder boards can be incredibly useful, too. The visual aids you opt for depend on your preferences – but go for something you know you are likely to use and even enjoy filling in.
You could also keep a diary or basic journal – which will help you to remember what you have done each day. Make a note of when your concentration is at its highest – as then you can plan your routine around this and get on with jobs or leave the house when you know you are at your best.
Both the diminished mental wellbeing that can come along with Dementia and its symptoms can be greatly alleviated with targeted therapies and activities. Usually these can be found at special classes in your local area – if you can’t find details of one near you, you can ask your local Age UK, Citizen’s Advice Bureau or your local doctor’s surgery.
The NHS also provides ‘Memory Cafes’ – details of these in your local area can be found on the nhs.uk website.
Therapeutic sessions can reduce disorientation and confusion whilst boosting self-esteem and wellbeing via a range of proven techniques – but they also provide a chance to socialise and meet with others living with the condition. Some classes don’t have a focus on Dementia but are ‘Dementia-friendly’ – such as chess groups, art therapy classes and writing or book clubs. Local groups also offer a range of support. Here is great one from Alchemy Arts who run memory cloud, which allows you to record and keep live your memories.
A diagnosis of Dementia can be devastating and difficult to come to terms with emotionally. Although family and friends can lend an ear, it can be preferable to speak to someone impartial in a private setting or as part of a support group, a person trained to understand your concerns.
There are specialist counselling services available to people with Dementia – especially in the early stages following diagnosis.
This can really help you to come to terms with your diagnosis and protect your mental wellbeing. Your counsellor may also be able to give you tips and advice for keeping your emotional health in check after your course finishes. Support groups are a great alternative option for people who want to socialise, feel fully understood and talk about their condition with others who really appreciate what they are going through.
Keep up any hobbies or daily activities you enjoy as much as possible – and actively seek others to keep your mind and body healthy and fit.
These could include classes (the benefits of these are explained in tip 2 and tip 5 in this chapter) or simple exercises you can do at home. For example, puzzles such as crosswords and Sudoku have been shown to help the brain to retain memories and stay sharper. Magazines, books and audio books also stimulate the brain and are a relaxing daily activity anyone can enjoy.
If you fancy something a little different, how about learning something new? You could learn to play an instrument, start speaking a new language or find out how to use a computer.
A diagnosis of Dementia doesn’t mean you have to hide away in the house all day. In fact, the opposite is true – the more you continue to interact with others and get out and about, the better you will feel. Make sure you’re talking with people every day – whether that’s family members, friends or neighbours.
Arrange days and evenings out – take a look at social clubs you can join and events you can attend. There are plenty of Dementia-friendly activities you can try – and as we explain above, some hobbies (such as sports, art and problem-solving crafts, music and cookery) can help to keep your mind and body active and healthy.
Communication is really important – and an open dialogue is essential to ensure that you feel understood by and connected with others.
Keep the conversation open with family, friends and any health professionals involved in your care. Make sure you’re honest about how you are feeling, and how they may be able to help you. If they do offer to support you, accept their help and try to work with them to find solutions.
Dementia isn’t something you should go through alone – so it’s crucial that you keep talking with your loved ones and anyone responsible for your care to avoid isolation and depression.
Although communication and socialisation are important, they can also be difficult for people with Dementia. Sometimes those with Dementia feel embarrassed or frustrated with themselves if they are unable to carry a conversation or feel confused or withdrawn.
But you shouldn’t feel ashamed of your diagnosis or want to hide the fact that you have Dementia. When you share with others, you can communicate more easily and openly, and enable them to understand you and help you.
Dementia can affect communication – which can make it difficult sometimes for you to take part in conversations, or express yourself. Make sure that you let people know you may have trouble understanding them – and ask them to repeat things if you need them to. If you have trouble finding the words you need, tell the other person – they may be able to help you.
Specialist, targeted exercises and activities have been shown to greatly improve wellbeing and alleviate the symptoms of Dementia.
Clubs, groups and physical activities not only help to sharpen the brain, they provide a sense of purpose and an opportunity to socialise, reducing isolation. This in turn lessens the anxiety, irritability, confusion and distress Dementia can bring.
Multisensory activities in particular have been shown to be effective in supporting better brain function. Things such as gardening, baking, singing in a choir, arts and crafts, reading or listening to the newspaper or a magazine, doing puzzles or even putting together a memory box or scrapbook full of old photographs are perfect ways to engage the mind.
‘Brain training’ software for your computer, phone or smart device may also be useful. Some of these programmes are specially designed to keep the mind active and accommodate people with Dementia.
Often when diagnosed with Dementia people focus solely on improving and supporting their mental capacity, and forget about the simple yet effective ways that they can keep their whole body fit and well. You can read a lot more about keeping fit here on our article “Keeping mentally and physically fit with dementia”.
Good brain health and physical wellbeing go hand in hand – so it’s really important that you look after yourself and stay active. The benefits of exercise and a healthy lifestyle are numerous and far-reaching – both for your physical, emotional and mental wellbeing.
Regular exercise is really important for physical health and mental wellbeing. The activity you choose doesn’t have to be strenuous – just getting out and moving in the fresh air is beneficial. Several studies have shown that as well as having naturally positive effects for your joints, muscles and overall health, exercise stimulates the brain. In particular walking, dancing, gardening and swimming have been shown to improve brain function.
Make sure that whatever you choose, it is something you enjoy. Exercising with friends or joining clubs and groups has an additional social benefit too.
Eating a nutritious, balanced diet can greatly improve your overall sense of health and wellbeing. It’s impossible to overestimate the impact of good food and a healthy lifestyle upon both the brain and the body.
In fact, certain foods in particular are good for the brain. These include oily fish (like salmon, tuna and trout), fruit and vegetables, nuts and whole grains. Try to aim for two to three portions of oily fish per week, and up to five portions of fruit or vegetables (especially greens like broccoli, spinach and peas) per day.
It’s also really important to stay hydrated – as dehydration can exacerbate common symptoms of Dementia, such as confusion and tiredness.
Make sure you are drinking plenty of water, and keep consumption of diuretics and sugary drinks like coffee, fizzy pop, alcohol and juices to a minimum. Of course you should still treat yourself to the odd cake or special meal now and again.
Keep the dialogue open with your doctor or specialist, and ask them about regular check-ups to ensure that your course of treatment is still right for you.
They may also be able to recommend group therapies and sessions you can attend which may help to improve your condition and alleviate symptoms through targeted therapy and improved wellbeing. Some surgeries and NHS trusts have Dementia drop-ins or support groups locally, for example. These can be attended on a regular monthly or weekly basis, or as and when you feel you need advice. Just check your local NHS site for more information.
Also remind healthcare organisations and surgeries that you have a diagnosis of Dementia – so you may need additional reminders to ensure that you keep your appointments.
If you have a carer who is a Lasting Power of Attorney or has been authorised to speak to medical centres on your behalf, you can ask them to deal with and arrange appointments for you. This way any correspondence can go through them, ensuring you won’t miss or forget important visits to the doctor, hospital or dentist.
Make sure somebody is around to keep an eye on your overall health. Although with a diagnosis of Dementia the focus often falls on mental wellbeing alone, the illness (and old age) can naturally bring about other conditions that need to be monitored and managed.
As Dementia progresses, you’ll need somebody else looking out for you, making sure that you take medication and access medical appointments.
Occupational therapy is another great option for individuals with Dementia. You can ask to be referred to an occupational therapist by your doctor or specialist. This person will be able to offer practical tips and advice – this will help you to live better and can make daily tasks much easier.
They should also help you to understand and make sense of your symptoms, and learn how to manage them effectively.
As Dementia progresses, living at home (especially alone) can become challenging. Even in the early stages of the condition, forgetfulness and confusion can pose a risk to safety. Despite this, understandably many sufferers wish to remain in their own home and familiar surroundings for as long as possible.
In this chapter we explain how this can be achieved with physical aids, simple security measures and external support, offering tips and advice to help you or your relative to live at home comfortably and safely.
Living safely at home can be difficult for individuals with Dementia. Because of common symptoms such as memory loss, disorientation and confusion, the home can become a dangerous place. Most people wish to remain in familiar surroundings for as long as possible – and fortunately there are plenty of tools to make sure that this can happen in most situations.
A list of things to do before bed (kept in a prominent place) is a helpful safety tool, as this reminds you to carry our essential tasks such as turning off the oven or gas fire, or locking the front and back doors.
There are also dementia aids you can buy to help you in the home – usually these are inexpensive and can be incredibly useful. These include pill timers (to ensure you take the right medication at the right time), monitors (so that family and friends can check that you are okay), and simple mobility aids such as handrails and ramps.
As Dementia is becoming a more high profile condition, plenty of specialist gadgets, such as the dementia clock, are coming on the market to help those with the condition and their families. These include key safes (to ensure easy access for family and emergency services should you lose your key) and motion sensor lights to conserve energy and avoid lamps being left on.
You can find loads more useful aids and products here. Have a look as we are sure there is something that will help you or a loved one.
Whether you are living alone or with a spouse, relative or friend, you will need to be easy to get hold of, and you should be able to contact loved ones easily.
Keeping important phone numbers by the phone along with a notepad to keep track of who you have spoken to is an easy way to ensure you’re staying in touch with your friends and family. You could also store (or ask someone to enter) the phone numbers on your phone, so that they are pre-dialled with a name beside them.
If you are friendly with your neighbours, you may want to consider asking them to keep an eye on you, or seeing if they are happy for you to give them your relative’s contact details in case they are unable to contact you.
Other useful and often inexpensive aids can help you to keep in touch with those around you. These include personal alarms (keep this on your person in case you need to get in touch with someone in an emergency) and mobile phones with big numbers.
If you’re unable to schedule regular time with family, friends and carers, companionship or care in the home is a great option.
Although there is a cost attached to this, it can be invaluable and greatly improve your health and wellbeing – as well as ensuring your safety. You can user our home care cost calculator to work out the costs of using home care services.
Companionship is often provided by specialist agencies, but charitable organisations and churches sometimes offer support free of charge.
This person (or group of people) can also help you with household tasks and accompany you on days out, take you shopping and join you as you engage in daily or weekly activities. Depending on their qualification they may even be able to administer personal care, cook meals and help with your medication.
Unfortunately, Dementia can make you vulnerable, both from elements within the home and external aspects.
In the home it is more likely that you could forget to turn the gas off, leave food in the oven or keep a tap running and cause a flood. Externally, it can become more difficult to determine whether you are receiving a scam call, to know who you are answering the door to, and forget that you have already given money to charity today.
Luckily there are a range of gadgets and tips to help you to stay safe at home. These include water stops (clever gadgets which know when your bath or sink is full and automatically prevent the flow of water), alarmed mats and cords to ensure you don’t enter an unsafe part of your home, and nightlights which come on automatically in the evening to help you find your way.
It can be difficult to deter unwanted calls (both in person and on the phone) without advertising vulnerability. However putting a few simple measures in place can easily combat this.
Call Minders can be placed upon your account (usually by your telephone provider – although other companies can also do this for you).
This ensures that only pre-programmed numbers can get through to you. All other calls will receive a message informing them that your line has Call Minder privacy settings, and advising them to get in touch via an alternative route.
Genuine callers (such as family and friends with a new number) will be able to contact your relatives and ask to be added to your call list.
For door-to-door salesmen a simple sign can act as a deterrent – as well as a key chain. This ensures that it’s less likely you’ll answer the door to a person you don’t recognise (or let them in). Key safes are useful – as detailed above. Carbon monoxide and fire alarms are also essential – if you already have these fitted, make sure that you ask someone to check the batteries regularly for you.
Additional features can be helpful – but removing hazards may also be essential. These include electric blankets, gas fires, hazardous materials and matches.
Clearly labelling the things you use the most in the house (such as your cereal cupboard, fridge, TV remote and telephone) can help to trigger your memory if you are feeling confused.
Colour coding has been shown to make labels stand out more and stimulates the brain, so try using contrasting colours on each label or set of labels – for example, in the kitchen, each label could have a red tag. Of course, make sure that you can read the handwriting and use block capitals in thick black permanent marker (or a printed label) to avoid further confusion.
Going out to buy shopping and preparing meals becomes harder with Dementia. Appetite can also be affected – especially when it is hard to know what time it is, or whether or not you have eaten. Dementia can result in over- or under-eating – both of which can have a negative effect on overall health. With this in mind it’s a good idea to make provisions for meals in advance to ensure that you’re eating a well-balanced diet.
Keep snacks handy so that you know you’re eating regularly – and can quickly grab something if you don’t feel up to making a meal from scratch.
‘Meals on Wheels’ type services are often very useful for individuals with Dementia. Having breakfast, lunch and dinner taken care of and delivered at the same times each day can reduce the stress of cooking and ensures that you are eating a well-balanced meal at regular intervals.
To avoid misplacing things or forgetting their locations, it’s a good idea to keep all essential items in a prominent, easy to see, easy to reach place. Glasses, house keys, telephones and money – anything you use on a daily basis should be kept here.
A bowl, container or brightly-coloured tray may help you to remember where you keep your essential items.
Dementia can make it easy to forget to take medication, or become confused over what date and time it is. Ask your pharmacist about pillboxes and organisers – these include the dates and times for each set of medication to remind you.
You could also try setting an alarm for your medication, or asking family members or carers to call you when it’s time to take it.
Pill timers can automatically pop open and sound an alarm to trigger your memory. It’s also a good idea to keep medication you don’t take on a regular basis or need often out of sight and reach to avoid any confusion.
It’s important to keep active – and for lots of people with Dementia it is necessary to be able to go out and about independently. Understandably, heading out (even to familiar places) can pose a safety risk as a result of common symptoms of the condition such as confusion and disorientation. In this chapter we explain how it’s still possible for you to enjoy getting out and about – without anxiety or safety issues.
In the early stages of Dementia, it’s still possible to go out and about independently. However you may still become confused, frightened or forgetful.
Although it may sound intrusive, it’s really important to let somebody know when you are going out and where you are going in case you become confused and forget where you are, or are unable to get back home.
Whenever you pop out, simply give them a call and leave a voicemail – or if you’re able to send them a text message. This way should you become lost or have difficulty getting home they will know when to expect you back, and can raise the alarm or come to help you if you are in trouble.
A personal alarm or medical alarm in pendant form can be useful for people in the more progressive stages of Dementia. This is usually a small, handy device you can keep around your neck or on your person.
If you feel you are in danger or become confused or frightened (or have a medical emergency), you can easily get hold of your relatives simply by pressing the button. Other handy gadgets are available – such as GPS insoles to ensure that family can always determine your location and reach you easily.
Always keep a mobile phone on your person – with the numbers of your family and friends saved so that you can easily call them without having to remember their contact details.
This also ensures that they can get in touch with you if they need to. Smartphones have the added benefit of a range of apps designed to help people with Dementia – or GPS tracking to enable their families to know where they are should they become confused or get lost.
If you are unsure or aren’t confident using a mobile phone, there are ‘basic’ phones available with large numbers just like a landline handset. You might like to put your phone charger in a prominent place at home so that you can be sure it always has enough battery, or invest in a portable battery pack so that you never run out.
In addition to a phone with numbers stored in it, keeping a card in your purse or wallet (somewhere you’re unlikely to forget about it, remove it or misplace it) with your details and those of your relatives is essential. Make sure you include your full name and any medical conditions you have (including Dementia), and several emergency contacts.
Although legal matters are an unpleasant and unwanted aspect of serious illness in later life, they do need to be considered carefully – as soon as possible. The earlier legal matters are dealt with, the more time can be spent coming to terms with a diagnosis of Dementia, and putting necessary measures in place to protect your wellbeing, dignity and personal wishes.
Lasting Power of Attorney is a type of legal document which enables a nominated person (normally a trusted family member or friend) to take care of financial or personal affairs on your behalf should you lose mental capacity. Loss of mental capacity is an unfortunate but inevitable symptom of Dementia – so putting a Lasting Power of Attorney in place is something to consider as a matter of urgency.
There are two different types of Lasting Power of Attorney. One concerns your health and welfare, and the other takes care of your finances, property and assets. It’s advisable to cover both types, as then you can be sure that your care and your money are arranged as you wish. Having both types in place can also help your appointed attorneys – as if they need to pay for care or medical supplies on your behalf, they’ll have access to your money in order to so do.
A Lasting Power of Attorney won’t come into play until you are considered to have lost mental capacity – so it won’t affect any decisions immediately.
However it is important to appoint a person or people you trust to look after your affairs on your behalf. They must always act in your best interests – and be agreed to by key family members before the directive can be put into place.
Here is a short video that we produced on the importance of a Lasting Power of Attorney.
It is very important for anyone to make a will – but when you have been given a diagnosis of Dementia, it’s essential. Without a will, you can’t decide what happens to your financial assets when you are gone – and the government will partition your funds accordingly. You may also want to consider producing a Living Will which allows you to set out what medical treatment you do or do not want as you get older and less well.
Beyond that you may also consider a discretionary trust will, This allows yo to leave a portion of your assets to a trust in your will.
When writing a will, you’ll need to consider who you want to give money or assets to (these are the people who will benefit from the will) and who you would like to carry out your wishes for you. This person is known as the executor.
You can write a will independently – but it will need to be witnessed and properly drawn up, otherwise it could be deemed invalid. It’s best to speak to a professional regarding your will – especially if you have multiple assets such as properties or businesses, or a significant amount of funds. They can then advise your executors accordingly, and keep it safe until it is needed.
Here is a video that we produced that sets out why making a will is so important.
Linked to all this is what you want to do with your assets when you do die. Preparing for this is called Estate Planning, and this is all about ensuring your financial affairs are in order from a legal perspective. One of the key things that you should do is look for the many legal ways that you can avoid inheritance tax. Doing so can save you and your family a lot of money in the future. The person that then deals with your affairs will have to get something that is called Probate. You can read more about the costs of Probate here.
In addition, there are many different legal routes that you can go down to protect your assets. You can out these in to different types of trusts. The most common types are:
It ensures that you will be able to have access to the treatment you want when you no longer have the mental capacity to make decisions regarding your care. It’s unpleasant to think of death and future mental incapacity or illness, but considering how you will be looked after now will ensure that your wishes are carried out.
An Advanced Care Plan can be varied, and could cover the following aspects of care:
If you are unsure about any aspect of your future care, it’s best to have an informal chat with your doctor or specialist, who can advise you accordingly about an Advance Decision.
Complex or difficult financial matters are an unfortunate downside of illnesses like Dementia and indeed later life itself – but with information, support and forward planning financial aspects can be taken care of appropriately now for the future.
This gives you the peace of mind and confirmation you need that your finances will be well looked after when you are unable to look after them yourself. It also ensures that you have enough money to accommodate future care requirements and take care of things that matter to you – such as leaving an inheritance, if that is important to you.
Although it’s not pleasant to consider care requirement, you will need to plan financially for this as soon as you can.
If you have already made financial arrangements, you may need to reconsider or alter them to accommodate the future cost of care. This could include adjusting your will, or thinking about arranging your assets so that you can release equity in your home at a later date, or sell property in order to pay for care.
It’s good to gather information now on pensions and any benefits you or your relatives may be able to receive either now, or in the future. Your circumstances may change – so accommodate for the rising cost of care (as a result of inflation, or escalating care needs) just in case.
You can use our calculator to work out your future care at home costs here. If you do currently own your own home then the best option you may have when it comes to paying your care costs is to consider using equity release. You can read our article that explains how equity release works. In essence it allows you to take money, tax-free, from your home with nothing usually repaid until after you have gone.
Here is a good article from the Daily Telegraph which discusses whether elderly home owners are sitting on a gold mine – https://www.telegraph.co.uk/financial-services/retirement-solutions/equity-release-service/is-your-home-a-goldmine/
If you are interested in seeing how much money you could get out of your house then click the equity release calculator below and it will estimate what you can get.
As discussed in Topic 6, ‘Legal Matters’, making a will is very important for everyone – not just people with Dementia.
However when facing a diagnosis of Dementia a will becomes even more imperative, as you can only make one or alter an existing will when you are deemed to have full mental capacity to do so.
From a financial perspective this is the only way you can be sure that your remaining assets are divided in line with your wishes when you pass away. If you need to access care now or in the future, it may affect the amount of money and the type of assets you can leave in your will for family and friends.
In light of this you may wish to reassess your inheritance plans – or build inheritance into your care cost plan and explore options that will enable you to leave something behind with the help of a financial planner.
When calculating care costs and inheritance it’s easy to forget that you’ll need a pot of money to use for daily living expenses – and enjoyment. Remember that you can still do the things you love to do – and activities and social events can greatly benefit your overall wellbeing.
Factor in a daily or weekly budget to suit your needs, remembering to include vital elements such as food, medicines and any direct debits you have (including household bills, utilities, phone contracts and insurance policies). Then consider memberships or fees for clubs or activity groups you attend. You may like to save and put some extra money aside for a holiday or day out, if you can. These are all important things to consider when budgeting.
Paying for care can very quickly become expensive. You can read our guide on the 6 main ways in which you pay for care here.
You may be eligible for benefits either as a result of your diagnosis of Dementia, other illnesses or financial factors – so it’s important to explore this in detail and review your situation every now and again to ensure you’re getting everything you’re entitled to.
One other important area to consider is whether you or your loved one is entitled to NHS continued healthcare. This is a complicated subject but in essence means that the NHS is responsible for meeting the costs of care. You can read more about NHS continued healthcare funding here.
Don’t be ashamed, embarrassed or nervous about claiming benefits. Care can be expensive, and any funds you receive can be used towards items and activities that can improve your mental and physical wellbeing. The type of benefits you can receive will depend on your personal situation, state of health, living arrangements and in some cases the amount of assets you possess.
You can find details of the types of financial support you may be entitled to online – but if you prefer to discuss it with someone it’s best to head down to your local Citizen’s Advice Bureau or speak to your healthcare professional or social worker. They can even help you with the application. If you are unsure, ask family or friends for further support.
If you choose to put a Lasting Power of Attorney in place, this will only come into play when you are deemed to have lost mental capacity. Therefore if you are in the early stages of Dementia, it is advisable to put measures in place now if you wish to deal with your finances now and make provisions for the future yourself.
Make a list including all assets and financial elements – from insurance policies, trusts and shares to property and savings accounts. Go through each one by one and decide how you are going to manage them as your condition progresses. You may like to keep things the way they are – or perhaps you’ll find peace of mind in consolidating or rearranging your current state of affairs.
This may already be necessary, depending on your health, prognosis and care needs. If you need further assistance, you can enlist the help of family and friends, or better still ask an impartial professional for financial advice.
Although short-term financial solutions shouldn’t be relied upon for a protracted or indefinite period of time, they can be incredibly useful in the interim as you make firmer arrangements. For example, setting up Direct Debits or standing orders for bills you normally pay manually on a regular basis can ensure that you don’t miss a payment, or need to remember when they come in.
You can also set up a joint account between you and someone you trust – a relative or friend perhaps (usually a spouse, partner or child). This enables them to help you to manage your finances and access money to pay for essentials without having a Lasting Power of Attorney in place.
It’s also useful to ask your bank about a Chip and Signature card. This replaces your Chip and PIN, so you can sign for payments and don’t need to worry about forgetting your number.
If you’re keen to leave behind some money for your loved ones, or wish to hand over control of your finances to a trusted relative to take care of for you, a trust may be a suitable option. A trust is a legal arrangement – so it must be set up by a professional such as a solicitor.
In essence the trustee (a nominated person of your choosing) looks after your assets (such as cash, property or investments) on behalf of another person. You will no longer own the money or assets you place in trust, so it won’t count towards inheritance tax and may not be considered in local authority means tests.
As Dementia progresses, it’s often necessary for individuals to access professional care. Depending on the situation this can be administered at home, or in a specialist centre or residential facility designed specifically for individuals with Dementia.
In this chapter we provide advice and share the key things to consider when deciding how and where to access care.
The type of care you need will largely depend on your situation and current condition. Individuals with Dementia can often access care at home first, either on a regular weekly or daily basis, or administered by a live-in carer.
Sheltered accommodation is also a popular option as it enables individuals to maintain independence, whilst ensuring that they are safe and in an environment set up to care for their needs. There are also residential homes specifically designed to look after people with Dementia.
Your choice will depend on your personal preferences, and the type of care available to you in your local area.
Once you’re aware of which types of care you’re able to access, you can make a decision regarding which is best for you. Companies and homes that specialise in Dementia are usually the best option – their staff will have specific training and experience, and as such will understand your condition and wishes much better.
It’s important to make sure that the homes you select provide care within your budget.
Determining a budget before you begin is the advisable. When considering how much you have to spend you should take into account all your assets – including savings, shares and property. Then think about the type of care you wish to receive now and in the future – and how long you expect to require care provision for.
If you would like to leave some money behind to family members or friends, now is the time to arrange this, provided you won’t be accessing care imminently. If you give away money prior to accessing care partially or fully funded by your local authority, cash gifts can be seen as ‘disposal of assets’, and may affect the amount of support you are entitled to.
There is a range of financial options available to individuals considering care. Although it’s best to plan for the eventuality of care provision as early as possible, some later stage options are still available. These include equity release, deferred payment and property rental or sale.
Don’t forget that you may be entitled to additional benefits, and can use any benefits you currently receive towards the cost of your care. To find out if you are eligible for financial support (or NHS Continued Healthcare – this is where the NHS meets your care costs), you can speak to one of the professionals in our NHS care funding directory.
Once you’ve chosen the type of care you feel will be right for you, it’s time to decide which company you are going to pay to administer it.
The best course of action is to make a shortlist of your favoured agencies or homes. Then you can investigate each further. It’s essential to visit residential establishments – without an appointment, if possible. This enables you to obtain an accurate impression of the care they give.
Here is a short video that we produced that gives you loads of useful tips on how to find a care home that is right for you or a loved one.
Both agencies and care homes should be subject to a thorough check of previous reviews and testimonials as recommended below. This is another way to ascertain a clear idea of whether or not their services are good quality, and are right for you. Official ratings can be found on the CQC (Care Quality Commission) website or requested directly.
Whether you are opting for care in the home or are moving into a residential establishment specialising in the treatment of individuals with Dementia, it’s important that you feel confident in their ability to look after you.
Reviews and testimonials are the best way to determine whether the company you have chosen or shortlisted offers a good standard of care. The best type of endorsements are those delivered via word of mouth, but if you are finding these hard to come by, you can go online to search for genuine recommendations.
It’s worth bearing in mind that the type of care you choose now may not suit your needs later down the line as your condition progresses. For example, if you choose in the interim to access care at home, you may find that you need to opt for residential care in a few years’ time.
Or you may decide to move into sheltered accommodation, but need Dementia-specific care provision at a later stage. This is a natural and common occurrence – but you will need to be prepared for it financially.
For this reason it’s important to consider change when setting out your initial budget, and keep money aside for the future. Care administered at home on a twice-weekly basis will cost significantly less than full-time care at a residential home, but should your circumstances change, you may need to be able to afford to spend more on your care.
Our online Care Cost Calculator enables you to more accurately predict and prepare for changes in your condition and the financial implications they bring.
It can be daunting to consider care options – especially if you’re in need of immediate support. Be sure not to put pressure on yourself, and think about interim care to help give you the time you need to make a sound decision. Interim care could be simple companionship, or a home care company popping in once a week.
Having a short-term solution in place ensures that you don’t rush into a type of care that may not be suitable for you, but helps you to stay safe and supported in the meantime.
Thispart of the article is dedicated solely to those supporting relatives or friends with Dementia – the tips you’ll find here should help you to care for and support your loved one.
Often the responsibility of care falls to family members and friends, especially in the early stages of Dementia. This means that they play an incredibly important role in sustaining the wellbeing of their relative or loved one.
It’s important therefore that family members and friends who act as carers on behalf of an individual with Dementia have access to all the resources and support they need. Perhaps you’d like to share some of the information contained within this article with your relatives to help them understand your condition better, and know how they can help and support you.
Every local authority offers a different range of support – but all areas should provide resources for people with Dementia and their families. This could be a special group to help with the symptoms of Dementia such as memory loss, or a course of therapy aimed at helping people to live with the condition.
Either way, knowing about and having access to these resources could significantly improve your loved one’s quality of life, so it’s worth investigating and exploring the options available on their behalf.
If you have Lasting Power of Attorney (see Chapters 5 and 6, Legal Matters and Financial Matters) in place, you may need to speak to agencies and medical professionals on your relative’s behalf to ensure that they are receiving the support they are entitled to.
NHS Continuing Healthcare provides free care provision at home for individuals with on-going medical needs – not everybody is eligible, but often individuals are not aware that they have access to this service. You can speak to a healthcare professional or social worker about this before you spend on care for your relative.
If you are caring full time or even part time for a family member with Dementia, you may be eligible for carer’s allowance.
This financial support can help you to cover some of the costs of looking after a relative, such as petrol, shopping and giving up work or going part time. ‘Joint benefits’ are not available for separate individuals – so if you are sharing the care with another relative, you will need to split the money between you.
If you plan on taking full responsibility for your relative as their mental capacity and physical capability diminishes, it’s important to consider putting a Lasting Power of Attorney in place.
It can be difficult to broach the subject of Lasting Power of Attorney with a loved one, as financial matters and care provision are often sensitive subjects.
Discussing someone’s funeral is never going to be an easy topic. But you should ask them what they would like and also discuss, or at least think about how the costs for the funeral will be paid. Increasingly more and more people are looking at pre-paid funeral plans. You can read more about funeral plans here.
Dementia is a complex condition comprised of specific illnesses collectively – and although its symptoms are recognisable and can be severe, it affects everyone differently.
You’ll need to gather as much information as you can in order to understand how you need to communicate with and care for your loved one.
It can be frustrating and upsetting to deal with Dementia without the right tools and support, so getting to know the condition now and learning with experience can make it much easier to look after your relative. You can find reliable sources of information on Dementia at the back of this article.
Looking after someone with Dementia can be challenging – and it can put a strain on the relationship you have with your loved one and other family members. It is also time-consuming and can have a financial impact as well as an emotional one.
You’ll need to consider other commitments (such as work and family) and think about whether you are able to care for your relative both now and in the future as their condition progresses.
You may like to think about care provision and future options now and prepare accordingly.
Many carers often neglect their own health, as their lives become consumed by looking after another person. However this can be detrimental to both physical and mental health. Although it may feel difficult to find the time to set aside just for you, caring for your own mental wellbeing will help you to provide better support for your friend or relative.
One day a week allocate anywhere between a day or an evening to an hour or two – just for you. This can be spent relaxing, doing things you enjoy – simply indulging in a favourite hobby, meeting friends or going out for a walk.
There are also carer support groups that are accessible free of charge or for a small fee. Often these charitable organisations provide activities, day trips, dinners and counselling for carers – and can even offer respite care for the relative to give them a proper break and complete peace of mind.
Caring full-time for a relative with Dementia can be exhausting and difficult. If possible (or necessary), consider some respite care, or be honest with yourself and your loved one if you feel the time has come to hand over to a professional carer.
This is important as it not only gives you a welcome break, but it preserves the familial relationship you have with your relative. This can sometimes be broken down as you become the ‘carer’ alone – additional care support enables you to spend quality time together.
If caring for your relative has taken an emotional toll on you, it’s important to recognise that your own mental wellbeing must be taken care of. It can be difficult to express feelings of anger, frustration, guilt or exhaustion – especially to family members and to the person you are caring for.
You may like to attend one on one counselling to talk about your situation privately with somebody impartial. Alternatively, you could look for a support group in your area so that you can chat with other carers in an empathic environment. Information of charities and agencies who may be able to help can be found in our ‘Further Advice and Support’ chapter.
You may also like to keep in touch with your GP and discuss how you are feeling with them, to see whether they can refer you for counselling or support.
If you require further advice and support regarding any of the topics covered in this article , please refer to our handy guides and articles across the site. article You can also find support and guidance from the following organisations:
gov.uk: The government’s website provides accessible, easy to digest information regarding benefits entitlement, Lasting Power of Attorney, making a will and more.
Dementia UK: Dementia UK is a dedicated charity helping people with Dementia and their families in England, Wales, Scotland and Northern Ireland. They provide a range of resources and additional advice for people with Dementia via their website.
Alzheimer’s Society UK: 62% of people with Dementia are affected by Alzheimer’s, making it the most common type of illness affecting those diagnosed. The Alzheimer’s Society provides advice and support and campaigns for awareness on behalf of individuals with Dementia in the UK.
Citizens Advice Bureau: Your local Citizen’s Advice Bureau has trained staff who can advise you on the type of support your local authority offers, legal and financial matters, and any benefits you may be entitled to. You can find details of your nearest Citizen’s Advice Bureau online or by calling your local authority.
nhs.uk: The NHS website has plenty of resources and details of the type of care and treatment you may be able to access in your area. It also explains the condition so that you can better understand how it may affect you, and how you can help yourself.
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