<\/p>\n
Caring for a person with dementia<\/a> affects the whole family and bring new challenges every day. Carers often tell us that they struggle to find support and are sometimes left feeling exhausted, overwhelmed and alone. But many also share moments of joy and closeness with the person they care for, and make new memories together. <\/span><\/p>\n Understanding the changes in the person with dementia and making sure you receive the support you need to care for them can help you stay physically and mentally well, maintain your relationship with them and find time for yourself outside your caring role. <\/span><\/p>\n Family carers and our dementia specialist Admiral Nurses<\/a> share their personal insight into what it\u2019s like to care for someone living with dementia, and their tips for coping. <\/span><\/p>\n There are many types of dementia<\/a>, each with its own symptoms<\/a>. The most common forms are: <\/span><\/p>\n It\u2019s important to note that everyone will have their own unique experience of dementia, with their own strengths and challenges. And as it progresses, people are likely to develop a wider range of symptoms, with more overlap between the different types. <\/span><\/p>\n Everyone\u2019s journey with dementia is different. While it\u2019s most commonly associated with memory loss, the symptoms are wide-ranging. Understanding how it affects the person you are caring can help you provide the right support and develop strategies to cope with the changes. <\/span><\/p>\n These are some of the symptoms you might see in a person with dementia. <\/span><\/p>\n Memory problems <\/span>\u2013 particularly with short-term memory \u2013 are common in people with dementia, especially those with Alzheimer’s disease. The person might forget recent events, repeat themselves in conversations, forget names and places and misplace items or put them in the wrong place. <\/span><\/p>\n A person with dementia might struggle with concentration, attention, problem-solving and decision-making. They may show changes in behaviour, for example obsessive, compulsive or uninhibited behaviour. Communication<\/a> difficulties are common. Many people also experience sundowning<\/a>: a state of intense confusion and anxiety<\/a> that typically occurs around dusk and often causes a strong sense of being in the wrong place. <\/span><\/p>\n \u201cIn recent years, Dad has been overcome with confusion once the sun goes down \u2013<\/span>\u202fknown as \u2018sundowning\u2019. Despite the fact it\u2019s pitch-black outside, he believes that it\u2019s daytime, so it\u2019s very hard to get him to sleep at night. As a result, I\u2019ve had to adjust my own sleeping patterns, often staying awake for most of the night and napping throughout the day.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Kaur, who cares for her dad, Mohinder <\/span><\/p>\n People with dementia may experience changes in personality, which can be upsetting for their carers. They might lack empathy, lose motivation and interest in their daily activities and the people around them, or become uncharacteristically irritable and aggressive. <\/span><\/p>\n \u201cCarol\u202fbecame aggressive, which was\u202fdistressing\u202ffor both me and\u202four children. She would verbally abuse me, and it felt like whatever I did was wrong. But Admiral Nurse\u202fKatie really listened to me and reassured me that I wasn\u2019t doing anything wrong, that Carol\u2019s behaviour was just part of the disease.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Russell, who cares for his wife, Carol <\/span><\/p>\n People with dementia may experience depression<\/a>, anxiety<\/a> and difficulty managing their emotions. This may be caused by dementia itself, or the impact of its symptoms on their daily life and the plans they had for the future. It might cause them to withdraw from other people. <\/span><\/p>\n \u201cSometimes I would have to remind Gopala to take a shower, or to\u202fbrush his teeth. This would lead him to become incredibly frustrated. He would get angry at me, which was so out of character for him. However, I knew deep down he was just angry at his condition and his inability to do things he\u2019d previously done with ease.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Pratibha, who cared for her husband, Gopala <\/span><\/p>\n Dementia can affect the senses, including how a person perceives things visually and responds to sensations like sound<\/a>, touch and smell. For example, a reflection in the mirror might appear to be a person or animal in the home, or loud noise may make the person feel overwhelmed and distressed. <\/span><\/p>\n In some forms of dementia hallucinations<\/a> are common, where the person experiences something that is not really happening. They might hear voices, see things that aren\u2019t there or feel physical sensations that are not real, for example feeling bugs crawling on their skin. <\/span><\/p>\n Some people with dementia experience delusions: false beliefs<\/a> that feel completely real, for example believing someone is trying to steal from them\u202for thinking their partner is being unfaithful. <\/span><\/p>\n Dementia can lead to physical changes. In some forms of dementia, these can occur in the early stages<\/a>: for example, people with Lewy body dementia may experience slowed movement, difficulty walking, tremors and falls. <\/span><\/p>\n As dementia progresses, a person may develop more physical symptoms, such as: <\/span><\/p>\n Caring for someone with dementia can be very challenging. It can be hard to see the changes in someone you love, and many carers and family members experience grief<\/a> for the person even while they are still alive. Relationships may also change <\/a><\/span>\u2013 for example, the person\u2019s partner may feel more like a carer, and parent-child relationships may reverse. <\/span><\/p>\n Guilt<\/a> is a common emotion. Carers may feel guilty if they feel they are not doing enough, or if they are sometimes frustrated or resentful of their caring duties. <\/span><\/p>\n As a person\u2019s dementia progresses, the impact on those around them is likely to increase. For example, their carer may have to reduce their hours at work or stop working completely because of their caring responsibilities. Or their caring duties may affect their physical and mental health. <\/span><\/p>\n It\u2019s very important to look after yourself if you care for someone with dementia so you don\u2019t reach the point of burnout. Our advice on looking after yourself as a carer<\/a> has tips to help you take care of yourself. <\/span><\/p>\n Bear in mind that while the caring role can be very difficult, you can still have a close and meaningful relationship with the person with dementia, even if it looks different from how it was before. For some people, a diagnosis of dementia can open up new opportunities \u2013 for example, to try a new hobby together, travel, or spend more time together as a family. <\/span><\/p>\n Even as dementia progresses, there can be moments of joy and connection that sustain you through the harder times. There may be opportunities to make new memories, even if the person with dementia can\u2019t retain those memories themselves. Some carers also feel a sense of pride and fulfilment from being able to care for their loved one. <\/span><\/p>\n \u201cI didn\u2019t hesitate to fill the role of Nan\u2019s primary carer. All of my life she had been there for me. Now it was my turn to be there for her. And even though the juggle of caring, full-time work and parenting was a lot, I never regretted this for a second.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Michaela, who cared for her grandmother <\/a><\/span><\/p>\n Caring for a person with young onset dementia<\/a> (where symptoms develop before the age of 65) can be particularly difficult. You may face additional challenges such as juggling work and caring, looking after children or teenagers, and changes in your financial situation. Children may also find themselves in the role of young carer if a parent has young onset dementia. <\/span><\/p>\n Our Admiral Nurses are here to support you as the carer of someone with young onset dementia, and we also offer specialist support to children and young people<\/a>. Please contact our Helpline<\/a> if you need to talk to someone. <\/span><\/p>\n \u201cCaring for a loved one with<\/span>\u202fdementia\u202fis an emotional journey filled with moments of love, frustration, and intense\u202fguilt. I think it stems from love, because you want to do everything you possibly can. It doesn\u2019t matter how much love, care and support you provide, you will always have feelings of not doing enough.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Ricky, whose gran had Alzheimer’s disease <\/a><\/span><\/p>\n \u201cMum will occasionally call me by her brother\u2019s or my dad\u2019s name, but we really get each other. She has good days and not so good days, but it\u2019s impossible to be around her and not feel her passion for life.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Will, whose mum Ronnie has young onset dementia <\/a><\/span><\/p>\n \u201cWhile Dawnie\u2019s final years were incredibly hard to navigate, we were able to create memories that I never thought we would be able to. We took her on a helicopter flight. We did a birds of prey experience. Went on a holiday to Devon. Visited Cadbury World. And had many outings for coffee and cake <\/span>\u2013 her favourite. This meant the world.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Rosie, who cared for her mum, Dawnie <\/a><\/span><\/p>\n \u201cLiving with dementia is hard. Your whole life changes. Relationship dynamics change. I\u2019m Andy\u2019s carer now \u2013 but I\u2019m also still his partner.<\/span>\u202fWe go swimming in our local lake and have signed up for marathons. We have learnt we can live well with dementia if we make adjustments. It\u2019s part of our life now.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Christine, whose partner Andy has young onset dementia\u202f\u202f <\/a><\/span><\/p>\n Dementia is a complex and challenging condition, whether you are living with it yourself or supporting someone with the diagnosis, but there are strategies to help you cope. Here are some tips. <\/span><\/p>\n Try to pre-empt the person\u2019s needs: offer drinks, snacks or help with personal care at regular intervals to prevent distress. <\/span><\/p>\n You might be reluctant to tell people that you are a carer \u2013 perhaps because you feel you are simply doing what is expected in your relationship, or because you feel you should be able to manage without support. But it\u2019s important that the people around you understand that you are caring for someone with dementia so they can offer support. <\/span><\/p>\n As dementia progresses, the person\u2019s needs will increase and they will need more support. You can ask your local Social Services for a care needs assessment<\/a>, which will help identify what support the person needs and any financial support that is available. You are also entitled to a carer\u2019s assessment<\/a> from Social Services which will look at what support you need in your caring role. <\/span><\/p>\n As a carer, accepting that a person needs additional support \u2013 whether from home carers or in a care home \u2013 can be difficult. It\u2019s natural to feel like you should be able to cope, or that you\u2019re letting the person down. But the right support can often free up time that was taken up with caring tasks, so you and the person with dementia can enjoy quality time and connection together. <\/span><\/p>\n \u201cEven though I have now found the right care home for Mum, the feelings of guilt don\u2019t go away but I try to consider what I would say to someone else in the same situation as me. Seeing that Mum is content and settled in the care home helps hugely and gives me some peace.\u201d <\/span><\/p><\/blockquote>\n \u00a0– Penny, whose mum lives with dementia <\/a><\/span><\/p>\nUnderstanding the different types of dementia <\/span><\/h3>\n
\n
What are the daily challenges of life with dementia?<\/a> <\/span><\/h2>\n
Difficulties with memory <\/span><\/h3>\n
Changes in behaviour and cognition <\/span><\/h3>\n
Changes in personality <\/span><\/h3>\n
Changes in emotions and mood <\/span><\/h3>\n
Dementia and sensory issues <\/span><\/h3>\n
Hallucinations <\/span><\/h3>\n
Delusions <\/span><\/h3>\n
Physical changes <\/span><\/h3>\n
\n
How carers experience the effects of dementia<\/a> <\/span><\/h2>\n
Caring for someone with young onset dementia <\/span><\/h3>\n
Carers\u2019 perspectives on dementia <\/span><\/h3>\n
How to cope with dementia as a carer<\/a> <\/span><\/h2>\n
\n
Practical tips for caring <\/span><\/h3>\n
\n
How do I tell people I am caring for someone with dementia?<\/a> <\/span><\/h2>\n
When to tell others <\/span><\/h3>\n
\n
How to tell people <\/span><\/h3>\n
\n
Recognising when extra support is needed<\/a> <\/span><\/h2>\n
Where to find help<\/a> <\/span><\/h2>\n