Living with dementia – your essential guide
In this guide, Beth Britton – award-winning dementia campaigner, consultant, Skills for Care Endorsed Training Provider, writer and blogger – provides you with the essential information and practical tips you need to help make the experience a little easier.
- With 850,000+ people living with dementia in the UK, and predictions that number will rise to 1 million by 2025, more families than ever before are supporting a loved one diagnosed with, or developing, a type of dementia.
- Dementia is not a disease, it’s a condition caused by a number of different diseases in which the brain degenerates, causing impairment to how the brain functions.
- There’s no cure and the condition does progress over time. But that doesn’t mean it’s not possible to live a long, happy and fulfilling life once diagnosed.
Jump to section:
What is dementia?
Dementia is caused when the brain is damaged by diseases. It is progressive, meaning the symptoms will eventually get worse, and current treatments are limited and only suitable for certain types of dementia. The word is an umbrella term covering many different types of the condition – and while experts don’t have an exact figure of how many there are, it’s estimated to be over 100.
Dementia can affect anyone, whatever their gender, ethnic group, class, educational or professional background, and there is no cure, although research is ongoing.
Many people living with dementia, and indeed people not living with dementia, register for Join Dementia Research to contribute towards understanding of dementia, support the discovery of new treatments and help in working towards a cure.
Types of dementia
When your loved one is diagnosed with dementia, the diagnosing clinician should be able to tell your loved one what type they have. This is useful to know since symptoms and patterns of progression vary from one to another, and it may help you and your loved one feel more prepared for what the future holds. Some of the most prominent types of dementia are:
Is Mild Cognitive Impairment the same as dementia?
Mild Cognitive Impairment (MCI) isn’t dementia and may never lead to dementia. As the name suggests, it involves mild deterioration in cognition (the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses), but this isn’t widespread and doesn’t cause significant problems in day-to-day life.
A person with MCI will often be kept under regular review in case their symptoms change.
What are the symptoms of dementia?
It’s a common misconception that dementia is all about memory loss. While memory loss – particularly short-term – is often a key feature, there are a number of other symptoms which can be more prominent. If your loved one has dementia, they might:
- Struggle to recall a familiar face or names
- Repeat the same questions, words or phrases, or have general problems with language
- Lose interest in hobbies they used to enjoy
- Become confused with the time of day and get lost in familiar places
- Lose track of their routine and appointments
- Find it difficult to focus on a hobby or a TV programme
- Show poor judgement, and walk out into busy roads or pick up a hot saucepan
- Misplace personal items, like glasses and medication
- Changes in their personality
- Difficulty completing daily tasks
- Experience mood swings and become unusually anxious, upset or irritable
- Feel a constant need to walk around
- Become paranoid and delusional, or have hallucinations
- Be resistant to change, operating a new phone or appliance
- Hesitate at doorways and curbs, or when floor coverings change
- Struggle to swallow food and lose weight
- Undergo changes in continence
- Experience mobility problems and run the risk of increased falls and accidents
- Difficulties with thinking and problem solving
This is by no means an exhaustive list. Your loved one may have a combination of these symptoms, or other symptoms not listed. Many of these symptoms also relate to conditions other than dementia.
If you have concerns that your loved one is potentially showing early signs of dementia, you should always seek the advice of a qualified medical professional.
How is dementia diagnosed?
The way your loved one is diagnosed with dementia will vary depending on their individual circumstances – namely, what type of dementia they have and how far advanced their symptoms are.
In a non-urgent situation, your loved one may first express concerns about developing dementia to their GP, who may conduct a basic memory test. If the results suggest further investigations are required, the GP is likely to refer them to a local memory clinic, as well as request blood tests (to rule out other conditions) and a brain scan.
The professionals at the memory clinic will document a full history of your loved one’s health and the events that have prompted concern. They’ll also conduct further memory tests, and should have the results of the blood tests and scans your GP requested. It is usually helpful for the person who knows your loved one best to accompany them to their appointment.
If the team at the memory clinic don’t feel they have enough information to make a diagnosis, they may request additional scans or tests. And if your loved one is under 65 years old or has a complex medical history, it may take them longer to confirm a diagnosis.
If your loved one is over 75 and in hospital for another condition, they may be asked routine dementia screening questions. In the event that their answers give cause for concern, they may need to undergo further investigations while they are an inpatient. Alternatively, they may be referred to their GP or memory clinic after they’ve been discharged, depending on their circumstances.
Other diagnostic permutations may occur depending on where in the UK your loved one lives and their own personal situation.
“It is very important to focus on what the person can do, not on what they may have lost. It is also important to focus on what the person feels rather than what they remember”Alzheimer’s Society
Treatments for dementia
There’s no cure for dementia. Treatment is all about managing symptoms and making life as fulfilling as possible. This goes beyond simply drug treatments. Talking and alternative therapies – such as music and reminisce are increasingly popular ways of coping with the condition.
There are four drug treatments currently available in the UK, though they aren’t suitable for every type of dementia. The diagnosing clinician will decide which of these drugs, if any, your loved one is offered.
If your loved one has other symptoms or conditions at the time of or after their dementia diagnosis, they may receive drug treatments specifically for them. This may include treatments for physical health problems, like high blood pressure or cholesterol, or mental health problems, like depression.
What drugs are available to treat dementia?
Currently, there are four drug treatments available in the UK to help those living with dementia – Donepezil, Rivastigmine, Galantamine and Memantine. They’re available as tablets, liquids, tablets that dissolve in water, or patches. They don’t cure dementia, but they can be a great help in supporting people to live a better life with the condition.
As an alternative, or complementary therapy, to drug treatments, your loved one may be offered a variety of non-drug treatments.
These can range from Cognitive Behavioural Therapy (CBT) and life story work (sometimes offered as a course through a memory clinic after diagnosis), through to music (including Singing for the Brain), art and dance, reminiscence, animal, massage, sensory, talking or bright light therapies, acupuncture, aromatherapy and reflexology.
If your loved one isn’t offered any non-drug treatments after diagnosis, you may need to research qualified therapists in your local area, or look out for adverts for dedicated classes or groups.
Keeping the medication balance
As the population ages, many people diagnosed with dementia may also be living with other conditions like diabetes or heart disease.
Your loved one may end up taking multiple medications without realising how they all interact. So if your loved one is taking four or more medications, it’s important to ensure these are regularly reviewed, and any side-effects are discussed with the prescribing doctor or pharmacist.
Coping with a dementia diagnosis
Living with dementia has a big emotional, social, psychological and practical impact. Indeed, it is often said that it’s not just the person who is diagnosed, but everyone who knows and loves them.
There’s no right and wrong way to react to a dementia diagnosis. You and your loved one may feel relieved to have an explanation for worrying symptoms, or you may both feel like you’re going through something akin to a grieving process.
You’ll both need to go through a period of adjustment after the diagnosis, and your loved one in particular may struggle to accept it, even if the clinical reasons have been clearly explained.
There are many different emotional reactions, and it’s important for everyone affected to acknowledge those emotions, and seek help and support if you feel you need it.
Making changes to your home
One of the most important ways to support your loved one with dementia is by creating a dementia-friendly home environment. Does their home help them live their life well? Does it compensate for any difficulties that they are experiencing, like disorientation and confusion? Does it maximise their independence and keep them safe?
Before you make any changes, talk to your loved one about what is working for them and what isn’t. Be mindful not to make wholesale changes in one go, as this might add to any confusion your loved one is experiencing.
Some of the key ideas you might want to discuss are:
- Really make it home: A meaningful and recognisable interior design, incorporating your loved one’s life story, with signage (signs that combine pictures and words). An open-plan layout to help with navigation, and use colour to help with understanding – this includes coloured loo seats (red ideally), meal plates (blue is a good choice), stair edging and door frames
- Add the right signage: Instruction signs to help with completing simple tasks, a walk-in shower and a specialist dementia clock (some models have built-in reminders to assist with mealtimes or medication regimes) can help maintain independence. Avoid purchasing new (overly technical) equipment – this could add to your loved one’s confusion
- Remove confusing surfaces: Covering reflective areas, laying plain and consistent flooring (avoid mats and rugs, which can look like a hole in the floor) and removing bold patterns (such as a flowery tablecloth that could look like actual flowers)
- Get the light right: Good natural lighting to reduce glare and shadows. Be mindful of light pollution into your loved one’s bedroom at night, and of minimising echoes and noise pollution. Consider setting maximum volumes for TVs and radios to avoid startling your loved one with sudden loud noises.
- An accessible garden: think handrails, well-lit seating areas, raised beds and sensory stimulation from plants.
- Monitor things closely: Alarms, sensors and detectors for falls, night-time and bathroom activity, property exits, water overflow, gas, smoke and carbon monoxide. Add extra front-door security to keep your loved one safe at home, and a GPS to provide additional security when they’re out (only with your loved one’s consent).
- Stay in touch: A smartphone or tablet device to help your loved one organise their life, keep track of what’s happening and when, communicate with friends and family, and revisit photos and videos.
More information about dementia environments is available from the world-leading dementia design experts Dementia Services Development Centre (DSDC), Stirling University.
“It’s possible to live well with dementia and write bestsellers ‘like wot I do’”As Terry Pratchett said during his life with dementia
The importance of preserving memories
When a person develops dementia, they may begin to lose their memories of important aspects of their life. This doesn’t mean your loved one cares any less about them.
More recent memories often go first, while distant ones remain for longer. The items we collect in our lifetimes are an important link to them all, and can be used to create life story resources. Think photo albums, collage photo frames, a memory book (which could include a family tree or timeline), a memory box (with lots of items your loved one can rummage around for) or a memory board.
You can personalise anything with images from your loved one’s life, even blankets. And if your loved one likes using technology, there are lots of life story apps available for iPads and similar devices. With this sort of technology, you also have the option to make audio recordings or videos.
Life story resources are particularly useful if your loved one requires professional care, as they can help care workers get to know your loved one. Just remember to add captions to any resources you create, so everyone can talk knowledgeably about their life story.
To find out more about creating life stories, there are a number of useful resources available, including the Life Story Network, Told in Yorkshire, the Alzheimer’s Society and Dementia UK.
Involving your loved one in making life story resources can be a lovely bonding exercise for you both. However, your loved one may also recall upsetting memories, and it’s important to be sensitive to those feelings.
Discover more of our articles on dementia
From dealing with a diagnosis and understanding the implications to getting advice on how to live well with the condition, our extensive resources will help guide you through what can be a tough and emotional moment.
A healthy lifestyle and dementia
Having a healthy lifestyle is a key part of living well with dementia, and a good attitude towards eating and exercise not only improves health, it can make your loved one feel better in everyday life.
Your loved one may need some support to ensure they maintain a healthy weight and balanced nutrition. Making interesting and varied food that looks and tastes appetising can help with a flagging appetite, as can involving your loved one with preparing food, which can increase the desire to eat it.
You can find out more about creating a healthy, balanced diet with the NHS Eatwell Guide.
Avoid overloading your loved one’s plate as this can make mealtime overwhelming, and don’t be wedded to three meals a day – sometimes your loved one will feel more satisfied with little and often throughout the day.
Remember, too, that mealtimes are social occasions, and making them special events can enhance their enjoyment and the amount of food your loved one eats.
Be aware that changes in eating habits can occur as dementia progresses. This may be because your loved one struggles to find the right words to ask for food, or experiences the side-effects of medication. Their taste buds may also change, and you may notice that they start to prefer sweet foods or finger foods.
Be mindful, too, of swallowing difficulties – known as dysphagia – as your loved one’s dementia progresses. If they develop dysphagia, you’ll need to carefully manage everything they ingest orally.
Many older people are at risk of vitamin D deficiency, and older women are at risk of osteoporosis if they don’t have an adequate intake of calcium, magnesium and other vitamins and minerals associated with good bone health. If you think your loved one is at risk of being deficient in essential nutrients, speak to their GP about supplements.
Hydration is also important. If you loved one is dehydrated, they may become more confused, and will be at greater risk of a urinary tract infection (UTI).
The Eatwell Guide offers advice on recommended levels of hydration and how to achieve them.
If your loved one already enjoys exercising, help them continue with it as much as possible. If they’re reluctant to take it up, think innovatively: walk to local shops or cafes rather than using transport, for example.
For those who are less mobile, you may want to consider seated exercises. But above all, try to make exercise fun for both of you. Incorporate music, join dementia-specific groups or classes in your local area or attend family exercise sessions together.
Alcohol and smoking
Government advice is to stop smoking to ensure a person lives a life of optimal health, and only drink alcohol within recommended guidelines. This is as true of those with dementia.
Your loved one’s GP can offer advice and support about how to cut down on smoking and alcohol, or to stop altogether.
Staying socially active
When your loved one lives with dementia, they are more at risk of isolation, loneliness and depression. So ensuring they have social interaction and mental stimulation is particularly important.
Social activity works best when it involves something your loved one enjoys and the company of like-minded individuals. You may be able to find local groups or classes they want to attend to support an existing hobby, or decide to try something new. If there aren’t any local options, you may be able to make connections further afield on the internet.
Peer support networks are particularly helpful for those living with dementia, bringing them together to share their experiences and support one another.
Your loved one can find out more by contacting the UK-based Dementia Engagement and Empowerment Project (DEEP), or the worldwide Dementia Alliance International (DAI).
Mental stimulation can also be useful for combating some of the symptoms of dementia. There are many dementia-friendly puzzles and problem-solving activities available created specifically for individuals with cognitive impairment.
Dementia and holidays
Living with dementia shouldn’t mean that your loved one needs to stop travelling in the UK or abroad.
Many UK transport providers are committed to being ‘Dementia Friendly’, providing staff with Dementia Friends sessions and adapting services to cater for people with disabilities.
When using public transport services like buses and trains, you can enquire about assistance in advance if you feel this would be helpful. In the future, people with dementia may also be able to apply to join the Blue Badge scheme for car parking.
If you’re thinking about going on a break with your loved one, there are a number of holiday providers who specifically cater for people with dementia. You can find out more about these on the Young Dementia UK website.
If you’d rather make your own arrangements, make sure you consider your transport options carefully and allow yourselves plenty of time to make transfers.
Book the type of accommodation that will suit your loved one best – this may be on the ground floor, or in a room away from the road – and consider how you’ll access the food and drink that they’ll enjoy (you may need to take some from home). If you want to visit any attractions, enquire in advance if they offer specific support for people with dementia.
Remember you’ll need to make sure you have comprehensive travel insurance, and it may be helpful to ensure emergency contact details are always on your loved one’s person in case you become separated.
Getting enough sleep
Dementia may adversely affect your loved one’s sleep patterns, leaving them exhausted.
This then has a negative effect on their day-to-day life: they may, for example, sleep more in the day, which can lead to activity at nighttime. Or they may be disorientated, thinking it’s morning and they should be getting washed and dressed when it’s actually nighttime. Sleeping problems may be particularly acute when the clocks change, or when there are sudden changes in temperature.
We recommend a relaxing activity before bed, a dementia-friendly clock in their room to remind them of the time, and blackout blinds to minimise external light. Your loved one should avoid eating large meals and consuming caffeine in the evenings. Active daytimes with some fresh air and exercise may also help.
Sensory and dental care
Sensory loss makes it much harder for your loved one to make sense of the world around them, so eyesight, hearing and oral health is vital for them to live well with dementia.
They should aim for regular eye and hearing tests, ideally conducted by professionals with experience of supporting people with dementia. NHS eye tests are free if your loved one is over 60, as are hearing tests if their GP refers them to an audiologist, or at many high street pharmacies, opticians or online independent audiologists.
If your loved one needs glasses or a hearing aid, they may require some encouragement to use them. Make sure they are comfortable, clean and adjusted correctly. Keep in mind some people with dementia may forget how to wear glasses or hearing aids, or simply no longer want to as their dementia progresses.
Regular dental checks are also important, as poor dental hygiene can affect your loved one’s ability to eat and drink, as well as cause other health problems. Again, try to find a dentist who is experienced in supporting people with dementia. At home, encourage them to maintain good oral hygiene: leave them a toothbrush to use and keep to a regular tooth-brushing routine.
If your loved one uses dentures, make sure they remain comfortable to wear, as weight loss can cause gums to shrink. Like glasses and hearing aids, your elderly relative may no longer want to wear them when their dementia advances. They may then need a softer diet as a result, but gums do harden over time and they should still be able to eat a wide variety of foods.
Supporting your loved one as a family
For many people living with dementia, the support of family, friends and neighbours is key to them being able to live well with their dementia. If you’re providing such support, identifying yourself as a carer and seeking appropriate help is key to you being able to maintain your own health and wellbeing.
Family carer support
Being a family carer can be extremely stressful, putting a strain on you both physically and mentally. In order to be able to care to the very best of your abilities, it’s important to ensure you access the services that you’re entitled to.
Under the Care Act, all family carers are legally entitled to an assessment of their needs by their local authority, which may lead to additional support. You can find out more information on your rights here, and on the assessment process here. Bear in mind you may need to be proactive and request this assessment if it isn’t automatically offered by your local authority. As a family carer, you may also be entitled to financial support from the government.
It’s also important that your GP knows you’re a carer. GPs keep a ‘carers register’, which may help you access services like the flu jab and a carer’s health check – an appointment that is just about you and your health needs. You can find out more information about how to look after yourself on the Carers Trust website.
“85% of people would choose to live at home for as long as possible if diagnosed with dementia”Alzheimer’s Society with YouGov (June 2014) as part of the ‘Fix Dementia Care – Homecare’ Report
If you have no previous experience of caring for someone with dementia, you may also find some of the free online training resources – from the University of Tasmania, for example – useful.
There may also be local carers groups in your area that offer support and advice. These are often run by national charities like the Alzheimer’s Society, or local charities. Plus, TIDE (Together In Dementia Everyday) offers a peer support network for carers of those with dementia, and the Carers Direct Helpline offers ongoing support to those who need it.
As your loved one’s dementia advances
While no one wants to think about crisis situations, it can help to make sure you’re fully prepared for future health problems and needs.
Your loved one may experience progressively deteriorating communication skills, dysphagia (swallowing problems) and issues with mobility and continence – two areas of physical deterioration family carers are known to find difficult to cope with.
They may lose more weight than is usual for them, have more falls and become more vulnerable to infection. Hospitalisation may be necessary to stabilise another long-term health condition or treat an infection.
The rate your loved one’s dementia progresses is entirely down to the individual. They may experience a sudden downturn if they have another health episode – a stroke, for example – or if they live with another condition, like diabetes.
To help with any future hospital admission, you may wish to support your loved one to complete a ‘This is Me’ document. This helps hospital staff get to know your loved one and their likes and dislikes, leading to a more positive in-patient experience. It’s also worthwhile to know about John’s Campaign, which centres on supporting families to be with their loved ones during periods in hospital.
Practical things to consider
When a loved one is diagnosed with dementia, there’s not need for anything to change overnight. However, it’s worth starting to think about some of the aspects of their lifestyle that are going to change and making sure as family, you’re ready. Overtime – as the condition progresses – it’ll be much easier if you’ve planned ahead.
Driving and dementia
When your loved one is diagnosed with dementia, they need to make sure they inform both the Driver and Vehicle Licensing Agency (DVLA) and their insurance company.
If your loved one doesn’t want to surrender their licence, their doctor will need to compile a medical report on their fitness to drive. Either their licence will be revoked and they will need to be retested, or it will be renewed for a fixed duration before another review.
Lasting power of attorney
A lasting power of attorney (LPA) is a legal mechanism that gives a trusted appointee the power to make decisions on your loved one’s behalf if they no longer have the capacity to make those decisions. It is only applicable in England and Wales.
There are two different types of LPA: a Property and Affairs LPA (which includes financial matters) and a Health and Welfare LPA. Your loved one can make either or both, but each one must be registered with the Office for the Public Guardian, who charge for this service.
An LPA must be made when your loved one has capacity. If your loved one chooses to make a Health and Welfare LPA and gives their attorney power over life-sustaining treatments, this would override any Advance Decision. If the attorney is not given this power, any Advance Decision your loved one has made would still stand.
Your loved one can make a will at any time, again providing they are considered to have the mental capacity required to make such decisions.
A will enables your loved one to decide what will happen to their assets and possessions after their death. It can also specify funeral arrangements, who will look after their pets and who will assume guardianship of underage children.
Dementia care largely falls under the umbrella of what is known as social care, which – unlike NHS services – is means tested. That’s why the support your loved one is entitled to receive from the state depends on their income and assets, as determined by a local authority assessment.
As such, many people will need to fund some or all of the cost of the care they require. If they had been diagnosed with another condition that required NHS support, however, their care would have been free at the point of use. In media reports, this is often dubbed the ‘dementia tax’.
Local authorities have a duty to carry out an assessment of your loved one’s care and support needs. Following this, they will conduct a financial assessment to assess eligibility for local authority funding. Depending on the outcome, your loved one may receive complete, partial or no social services funding.
Anyone in England with assets of below £23,250 qualifies for some state support with their care needs. Any higher than this and they will need to fund their own care – either at the point care is delivered, or by deferring those costs until they sell their home or pass away, at which time the local authority will claim what it’s owed. Be aware that although these are the national guidelines, local authority interpretations may vary.
Are you entitled to NHS Continuing Healthcare?
NHS Continuing Healthcare funding covers your care costs in full. It’s available to those with a ‘primary health need’ – something that dementia doesn’t usually fall under.
However, there are certain circumstances where you may be living with dementia and be eligible – for example, if you’ve survived a stroke and now have vascular dementia. To see whether you’re eligible ask your GP to perform a Checklist assessment.
If your loved one is going to self-fund their care, they and you may want to look at options like equity release (if they’re a homeowner) or Direct Payments (if they’re eligible for some social services funding). You’ll find more advice on the options available to your family on the ‘Paying for care’ section of Elder’s website.
When self-funding, it’s important to be a savvy consumer. Think carefully about the type of care your loved one needs, and research what’s available in your local area. You’ll want to be particularly careful to help them choose care that is going to be responsive to their personal needs and enable them to live as well with dementia as possible.
Your loved one may be entitled to Attendance Allowance, Disability Living Allowance or a Personal Independence Payment (PIP). They may also be able to obtain housing benefit or council tax benefit from their local authority to help with the cost of care.
Bear in mind that many benefits are means tested, and will require an assessment of eligibility.
Dementia care services
Often those who live with dementia do so for many years, and their care and support is far more about their social needs than their medical needs. This is why people with dementia usually access social care, voluntary sector and community-based services more often than NHS services.
There are a number of different types of dementia care, including shared lives schemes, cooperatives, supported living and retirement communities. But we’ve taken a look at the most common types below.
Care homes vary in the levels of care they provide. Residential care supports your loved one in only a few aspects of their life, while full nursing care is similar to what you’d expect from a non-emergency hospital ward.
Moving to a care home is often permanent, but it might also be a temporary measure. This is known as respite care, and usually takes place when your loved one is recovering from an operation or illness, or you and your family need a break.
Staff provide meals, housekeeping services and assistance with everyday needs – dressing, mobility, personal hygiene and so on. But since the number of staff varies from residence to residence, so does the amount of one-on-one care your loved one receives.
This is when a professional carer intermittently visits your loved one in their own home – usually daily.
These caregivers may help with administering medicine and can also help with personal care, including washing, dressing and preparing meals. The level of support depends on the package agreed, and how much time the carer has before they need to leave and visit someone else.
This is when a professional carer moves into your loved one’s home to help you support them, or to provide a complete care package if they live alone.
It’s the optimal alternative to a care home, enabling your loved one to continue to lead an independent and fulfilling life while receiving one-on-one care for their dementia. It also provides greater consistency than domiciliary care, where carers are likely to vary from day to day.
Elder is the UK’s leading introductory live-in care agency, helping match your loved one with a carer most suited to their needs and circumstances. They’ll find out what your loved one does and doesn’t like, as well as exactly what kind of support they need, and handpick a carer accordingly.
You can get in touch with them by calling 0330 134 6372, or by emailing [email protected]. They’ll be happy to help discuss your care options with you, and to tell you more about how they support those with dementia.
If you need further dementia support, there are also a number of other resources available, including:
– Admiral Nursing Dementia Helpline
– The National Dementia Helpline from the Alzheimer’s Society
– Talking Point from the Alzheimer’s Society
– Reading Well
– Dementia Challengers