What you need to know about dementia
Dementia is a very common condition that affects memory and thinking. An estimated 982,000 people are currently living with dementia in the UK (Alzheimer’s Society).
That number is set to increase. That’s because dementia mostly affects older people, and the population as a whole is getting older. For every three people born in 2015, one is expected to develop dementia during their lifetime (Alzheimer’s Research UK).
There are many types of dementia. Alzheimer’s, vascular dementia and Lewy body dementia are the most common. Each can have different symptoms, and these may develop gradually or suddenly depending on the type.
Common dementia symptoms include:
• Memory loss
• Difficulties planning and organising
• Language and communication issues
• Confusion about time or place
• Difficulties understanding visual information
• Changes in mood, personality and behaviour
What all types of dementia have in common is that they’re progressive diseases. That means symptoms become more noticeable over time and increasingly affect a person’s day-to-day life. It’s likely that the person living with dementia will eventually need support from professional carers, whether that’s at home or in a dedicated care home.
However, that doesn’t mean all hope is lost. Many people can, and do, live fulfilling lives for several years after a dementia diagnosis. It’s all about getting the right support and knowing the right strategies for how to deal with dementia.
That’s what this guide is about. We show you tips and strategies for coping with dementia as a patient and as a caregiver. That way, you can make the most of happy times together and make the right plans for the future.
Coping with dementia as a patient
If you have been diagnosed with dementia, we’re sorry. We know that dealing with a dementia diagnosis and adjusting to changes can be very challenging for you and those around you.
A dementia diagnosis can bring a lot of difficult emotions. You might feel frightened, angry, confused or uncertain about what the future holds. These feelings are normal, and there’s no single ‘right’ way to cope with a diagnosis.
The most important thing to know is that dementia doesn’t change who you are. You may need more support over time, but you can still make choices, maintain relationships and do other things that are important to you.
Try to take each day as it comes and focus on enjoying the things that matter, whether that’s spending time with family or doing a favourite hobby. This should help you stay positive.
Many of the tips in this guide are just as relevant to you as anyone else. There’s a lot you can do to maintain your independence for longer and look after your own health and well-being.
Coping with dementia as a caregiver
A dementia diagnosis is a learning experience for everyone involved, including those caring for the dementia patient. You need to learn how to cope with someone with dementia and support their changing needs. And at the same time, your own life is changing. Routines, relationships and roles that may have been established for years might now suddenly feel very different.
As a caregiver, it’s really important to make time for yourself and to process your own feelings. These feelings are just as important as the feelings of the person living with dementia.
For instance, it’s quite normal to feel:
• Fear about how dementia will progress and the challenges you might face
• Denial as a coping mechanism – you might think, ‘This can’t be happening to us’ or ‘I can’t accept this’
• Anxiety from not knowing what to expect or how to provide the right support
• Grief over your changing relationship or the life you had before
• Anger or resentment because of how the diagnosis will change your life
You shouldn’t feel bad about feeling these emotions. However, if you don’t address them, they can impact your mental well-being and make it difficult to focus on what’s important right now. Negative emotions make it easy to get stuck thinking about the future.
Coping with dementia means making time for yourself and your own well-being, as well as the person living with dementia. Here are some strategies you can use.
| Build a support network | Make time for yourself | Reach out for help |
|---|---|---|
| That way, you’ll have people to turn to if you need a helping hand or to talk things through. | Rest when you need to and build ‘me time’ into your diary, calling on helpers to cover care when needed. | Charities, support groups and care providers can all provide support, such as respite care or practical advice. |
| Connect with other caregivers | Look after your health | Stay active |
| That could be through a local group or via an online forum. Sharing tips and experiences can help you feel less alone. | Making time for a healthy diet and exercise can be tough. But staying healthy will make things easier in the long run. | It’s really important to carry on doing things you enjoy, whether that’s a hobby or an active social life. |
Practical tips for coping with dementia day-to-day
Whether you’ve been diagnosed with dementia or you’re supporting someone living with dementia, these practical tips should make day-to-day life feel a little easier:
• Educate yourself: do your research on the type of dementia that’s been diagnosed. This will help you understand what to expect and how to cope with changing needs.
• Stay positive: staying positive can help you both navigate this difficult time. Remember that people with dementia can live for decades, and it’s important to make the most of good times.
• Stay social: social activities provide mental stimulation and can improve mental well-being. Look for dementia-friendly activities in your area, such as memory cafes, film screenings or exercise classes.
• Establish a routine including plenty of daylight and exercise: Following a routine can help prevent confusion and anxiety. Use a weekly timetable to schedule activities.
• Keep important items in obvious places: for instance, keeping your keys in a bowl in the hall.
• Keep a list of helpful phone numbers: including emergency contacts.
• Use a pill box organiser: to help you remember which medicines to take and when.
• Set up Direct Debits: so regular bills are always paid on time.
• Make sure your home is dementia-friendly: that might mean adapting the bathroom or kitchen, changing the décor or simply creating a calm, safe and uncluttered environment.
Strategies to cope with the early stages of dementia
Learning how to cope with the early stages of dementia is one of the biggest challenges you’ll face as a caregiver or patient.
However, it’s also an opportunity. Most people with early-stage dementia can still live independently, perhaps with a little support. If your partner is living with dementia, these early stages can be the best time to get finances in order and discuss your future together.
It’s also a period of adjustment and learning for both of you. For the person living with dementia, it’s about adjusting to changing symptoms and learning when to accept help. For the caregiver, it means adjusting to a new role and learning how to offer the right support while respecting their independence.
The most important thing is good communication. By working as a team and communicating your feelings, you can establish routines that work for both of you long term.
Financial and practical planning
It can be difficult thinking and talking about the future. However, the early stages of dementia are a good time to chat about how things might work in the months and years ahead. That way, the person living with dementia can make sure they have a say in their own future.
Think about:
• Work matters: if the person who has been diagnosed is working, how will they transition out of work? Are there employer-backed illness benefits or pensions they may be able to access?
• Benefits: do you know what benefits you might be eligible for? If you’re in England, that could include the Attendance Allowance, the Personal Independence Payment or the Council Tax SMI exemption.
• Care preferences: would the person living with dementia prefer care at home or to move into a care home? Is there a certain kind of person they’d like to provide care (e.g. based on their gender, or certain hobbies or interests)?
• Paying for care: will you self-fund care, or might you be eligible for council funding or NHS Continuing Healthcare? Learn more about how to fund care.
• Non-negotiables: there might be certain routines or activities that feel very important to who they are. For example, that could be ‘I always wake up early’ or ‘I like my peace and quiet after dinner’. It’s a good idea to establish these non-negotiables now.
• Lasting power of attorney (LPA): this is a legal document that allows a nominated person to make decisions on another person’s behalf. This must be set up while the person living with dementia has what’s called ‘mental capacity’.
• Wills and inheritance: no matter your age or health status, writing a will is an important part of future planning. It’s something to think about sooner rather than later.
Learning to accept and offer help
If you’ve been diagnosed with dementia, it’s natural that you’ll want to stay as independent as possible for as long as possible. And if you’re a caregiver or partner, you’ll want to do everything you can to support this.
It can be a sensitive subject, and it takes tact and patience to get it right. Don’t worry if you make mistakes. It’s a learning process that you can navigate together by communicating and working as a team.
Here are some things to consider as you go.
| Only step in where needed | Take a positive approach | Focus on strengths |
| Unless it’s unsafe, let the person with dementia try activities and actions on their own. Provide support and encouragement where needed. | Assume the person will be able to complete a task. If they’re frustrated, try to identify the source of frustration rather than stepping in. | Everyone’s different, and some tasks might prove harder than others. Focus on lower-stress activities where the person with dementia can genuinely help. |
| Talk to each other | Create a help signal | Work together |
| Sometimes, the easiest way to know if help is needed is to ask directly. And if you need help, don’t feel bad about asking for it, either. | If asking for help outside the home feels embarrassing, agree on a phrase or signal that shows when it’s OK to step in. | Remember: it’s easier when you work as a team. Be sure to check in regularly to make sure you’re offering or receiving the right support. |
Dealing with dementia behaviour changes
As dementia progresses, it’s common for the person living with the condition to show changes in mood, personality or behaviour. These changes can be very distressing for the person and for their loved ones.
If you’re caring for a person with dementia, try not to take things personally. Often, mood swings and out-of-character behaviours come from frustration or confusion. It may be that they’re trying to communicate something they’re thinking or feeling.
Learning how to deal with dementia sufferers who show behaviour changes is about identifying what’s causing the behaviour and taking steps to rectify it.
Do your best to:
• Learn their triggers: do behaviours happen at a certain time of day? Do they get angry or frustrated when you ask them to do a certain task? Keeping a diary can help you identify the triggers that cause out-of-character behaviour. Once you know, you can take steps to remove these triggers or offer the right reassurance.
• Provide stimulation: regular exercise, social activities and hobbies can build confidence and reduce out-of-character behaviours.
• Be calm and reassuring: let them know they’re safe and that you’re there for them. Try to provide a quiet, calming and uncluttered environment.
It’s also a good idea to visit their GP and ask for an assessment. That’s because out-of-character behaviours aren’t always a symptom of dementia. They can also happen because of untreated pain, depression or even infections.
Your GP will be able to rule out these causes or provide the right treatment.
Common behaviours and what to do
| Behaviour | Why it might happen | Strategies to try |
|---|---|---|
| Repeating the same question or activity | They forget what they’ve already said or done | Be patient – remember that they’re not being difficult on purpose |
| Try to address the cause – for instance, if they keep asking where they are, reassure them that they’re safe at home | ||
| Change the subject – encourage them to talk about something they enjoy or a happy period in their life | ||
| Waking at night | Dementia can affect sleep patterns and cause confusion about time | Make sure they have plenty to do during the day, including outdoor activities |
| Keep their bedroom calm and comfortable | ||
| Try to limit naps | ||
| Limit caffeine and alcohol at bedtime | ||
| Pacing, fidgeting or wandering | Anxiety or agitation – perhaps because they’re hungry, need the toilet, feel disoriented or are simply bored | Give them food or something to drink |
| Help them use the toilet if necessary | ||
| Maintain a daily routine to keep them occupied and reduce anxiety | ||
| Consider using a tracking device or alarm if they wander outside the house | ||
| Agitation, anger or aggression | Dementia affects our ability to regulate emotions, so frustration, fear or feeling overwhelmed can show as anger or agitation | Avoid confrontation – stay calm and lower your voice |
| Give them space – you may need to leave the room for a while | ||
| Gently redirect their focus if possible – offer a favourite snack, for instance, or put on some familiar music | ||
| Ask their GP for help identifying underlying causes or for other possible treatments |
My husband or wife has dementia – what help can I get?
Whether you’re a spouse, a child or a friend, caring for a person living with dementia can feel very lonely. But you’re not alone.
Help may be available from charities, your local council or the NHS. It’s OK to ask for this help, and you shouldn’t feel bad about accepting it.
Here are some useful contacts you can turn to:
• Your local council: They can arrange a care assessment to determine what kind of care the person with dementia needs. Depending on your circumstances, it may be able to help fund live-in dementia care or another type of care.
• Local groups and initiatives: You might find dementia-friendly social sessions and activities, caregiver support groups or services that can give you a break from care. The Alzheimer’s Society dementia support search tool is a good place to start.
• The Alzheimer’s Society offers lots of useful information and practical advice, as well as the popular Dementia Support online forum.
• Dementia UK is a specialist nursing charity that provides practical, clinical and emotional support through their team of Admiral Nurses.
• Carers UK is one of the UK’s leading charities supporting unpaid caregivers. It can offer advice on accessing benefits, your rights, looking after your well-being and much more.
• Your local GP: They can refer you to useful NHS services, including specialist memory clinics, annual dementia health checks and community nursing care. They can also support you as a caregiver if you’re feeling low or depressed.
When is the right time to think about care?
Dementia affects everyone differently, and different types of dementia can progress at different rates. That means there’s no single ‘right time’ to consider professional care. It all depends on your individual circumstances, needs and experiences with dementia.
Some people can live relatively independent lives with dementia for several years. Others might need more help sooner – especially with certain types of dementia or if their family can’t provide the care they need.
That said, it’s a good idea to ask for a care assessment from your local council early on. They’ll send someone to closely assess the needs of the person living with dementia and determine what support is suitable. They might identify ways to help you hadn’t considered.
Eventually, the person living with dementia will likely need 24-hour care. Providing this level of care might be difficult for the family and other unpaid caregivers.
Whether you’re at that stage or you’re planning ahead, we’re here to help. At Novus Care, we offer several types of dementia home care, ranging from weekly visits to 24-hour live-in care. So, even if you only need occasional support, you can plan our care around your life.
When you’re ready, get in touch. We’ll chat about your needs and can put together a tailored care plan that provides the right level of support.
Your questions about coping with dementia answered
What strategies exist to develop coping skills for people with dementia?
There’s a lot you can do as a caregiver or as a person living with dementia to help develop practical coping skills.
• A predictable routine can help reduce confusion and anxiety.
• Breaking tasks into smaller steps can make things feel more achievable than focusing on one complex task at once.
• A calming environment without excessive background noise, clutter or harsh lighting can help minimise stress.
• Visual cues and reminders can make day-to-day life easier.
You’ll find many more tips and strategies throughout this guide.
Is there a strategy for dealing with dementia and anger?
It’s not uncommon for people living with dementia to show anger or aggression, especially during the later stages of the condition. This anger might be out of character and can be very distressing for everyone involved.
Some expert organisations, such as Dementia UK, use a three-step framework:
1. De-escalate: speak softly and slowly and use reassuring body language. Focus on validating their feelings, not arguing over the facts.
2. Investigate: is there something in the environment that could be overstimulating them and triggering the anger? Is the TV too loud or the room too dark? Make sure they’re not in physical pain, either – hidden discomforts can cause angry outbursts.
3. Pivot: once their emotions are validated, try shifting to an easier topic or a comforting activity (such as offering a cup of tea). If anger becomes aggression, you may need to leave the room so you both can calm down.
Can you get training for dealing with dementia as a caregiver?
Yes. Several charities offer workshops and courses for dementia caregivers, and many are free for unpaid carers.
One example is ‘Dementia: what next?’ from Dementia UK. This free online programme teaches you key facts about dementia and can help you figure out your next steps. It’s also worth looking at Understanding Dementia’s family carer training, which is available as a free online course.
What specialists deal with dementia?
There are many medical and support specialists who help those with dementia. You’ll likely work with some of these specialists as you navigate your dementia journey.
Examples include:
• Medical specialists, such as neurologists (brain specialists), geriatricians (doctors for age-related illnesses) and psychiatrists
• Nursing specialists, including trained dementia nurses, community health nurses and Dementia UK’s Admiral Nurses
• Allied health therapists, including occupational therapists (who assess the home environment) and language therapists (who help with communication)
Can I get help to take a break as a caregiver?
Yes. Taking breaks is really important for your own health and mental well-being. When another carer steps in to cover your care, it’s called ‘respite care’ – and there are several ways to arrange it:
• Sitting and befriending services, where a trained volunteer visits your home and spends time with the person living with dementia. This can give you time to see friends, go to appointments or simply rest.
• Day care centres: often run by community centres, these give the person with dementia a safe space to socialise and engage in activities. Meanwhile, you get a day or half-day to yourself.
• Respite care from a professional carer: agencies like Novus Care offer respite home care from highly trained carers. This way, you’ll know the person with dementia is getting a high standard of care – even if they have complex needs.
Will a person with dementia eventually have to move into a care home?
It’s not inevitable. With the right care, many people living with dementia can stay at home and still receive the support they need.
That’s where Novus Care can help. We provide dementia care at home from highly trained carers, all tailored to your needs and your circumstances.
Our carers are highly experienced at caring for those living with dementia, as well as other complex health conditions. That means you can be confident you’ll receive the right care, whether you just need extra help at home or around-the-clock health support.
Learn more about our dementia care services.
For an informal chat why not contact Novus Care today to discuss how we can help on 0800 138 4030 or email: [email protected]
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