How we can support you
Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support you.
Everyone will have their own experience of living with dementia. This is shaped not just by the type and stage of dementia, but by a person’s lifestyle, personality and the support they receive.
People affected by dementia, alongside our specialist Admiral Nurses, share their personal insight into what it’s like to live with the condition.
Everyone’s journey is unique
Dementia brings both challenges and opportunities. People living with dementia can easily become isolated and overwhelmed by feelings of despair. But many people can also learn new skills, meet new people and have fun, especially if they are well supported.
“The overwhelming response to dementia tends to be negativity. While I understand this perspective, it overlooks the fact that I am still here, and there is so much I can do. I now dedicate a significant part of my life to things that bring me joy and meaning. I try to live my best life.”
– Gail, who has young onset dementia
“My diagnosis of dementia did not mean the end. I’ve started new hobbies, like painting, and learnt new things about myself. I’ve put my energies into advocating for people who have dementia. For me, dementia has been the start of a new chapter, and it’s not a bad chapter.”
– George, who has mixed dementia
Understanding the different types of dementia
There are many types of dementia, each with its own symptoms. The most common forms are:
- Alzheimer’s disease
- vascular dementia
- frontotemporal dementia
- Lewy body dementia
- mixed dementia: a combination of two or more types, most commonly Alzheimer’s disease and vascular dementia
Over 70,000 people in the UK live with young onset dementia: any form of dementia that develops before the age of 65.
What are the daily challenges of life with dementia?
Everyone will experience dementia in their own way. While it is often associated with memory loss, there is a wide range of symptoms, including difficulties with thinking and communication, and changes in behaviour, mood and personality.
Difficulty with memory
Difficulties with memory are common in dementia, particularly Alzheimer’s disease. However, in the initial stages, memory loss mostly applies to difficulty forming new short-term memories. Long-term memories – for example, of the person’s younger days – often remain intact.
A person with dementia might:
- struggle to remember recent events
- forget recent conversations, often leading to the person repeating themselves
- forget names and faces
- get lost, even in familiar places
- misplace items or put them in the wrong place
- forget appointments, events and occasions
“Do not ask us if we remember something and get annoyed when we don’t – there is nothing we would like better than to remember. But keep in mind that our failing memory does not necessarily mean we are unable to think logically. We may no longer know instinctively what day it is, or what we had for breakfast, but some of us can still remember faces from long ago and retain our vocabularies.”
– Peter, who lives with Alzheimer’s disease
Behavioural and cognitive changes
Changes in behaviour and cognition (thinking) are common in people with dementia and can make everyday life more difficult. These changes may include:
- increasing difficulty with daily tasks, for example finding it hard to plan, organise, solve problems or make decisions
- finding it hard to concentrate and pay attention
- restlessness, obsessive or compulsive behaviour, eg making repetitive movements, pacing, frequently checking doors and windows
- misunderstanding what is seen, for example thinking a reflection is a stranger in the home
- difficulty communicating
- disturbed sleep
- changes in visual and spatial awareness, which could lead to falls, impaired driving ability etc
- sundowning: a state of intense confusion and anxiety that typically occurs around dusk and often causes a strong sense of being in the wrong place
- increasing difficulty with mobility
- problems with eating and drinking, including recognising hunger/thirst, preparing food and eating independently
- incontinence (usually in the later stages)
Changes in personality
People with dementia may experience changes in personality, which can be upsetting and frightening for them and those around them. These changes might include:
- loss of empathy
- loss of motivation and interest in their daily activities and the people around them
- becoming unusually irritable and aggressive
- uninhibited behaviour, eg staring at people, using inappropriate language, making sexual comments
- neglecting personal hygiene
The impact of dementia on emotions and mood
A diagnosis of dementia, and its increasing impact on everyday life, can trigger a range of emotions. A person with dementia may experience:
- shock – particularly if the diagnosis was unexpected
- relief that they now know what is causing their symptoms
- disbelief – especially in the case of young onset dementia
- feelings of being overwhelmed
- grief for the person they once were, and the future they were anticipating
- feelings of helplessness/hopelessness
- guilt at the effect dementia might have on their family
- fear about how their condition will progress
People with dementia may also experience mood changes, such as feeling anxious, irritable, depressed or distressed. These may be symptoms of dementia itself, or the result of worrying about what is happening and how it will affect them in the future.
The impact of dementia on mood and emotions can make day-to-day life more challenging. For example, someone who is feeling depressed may withdraw from other people, lose their appetite or find it hard to sleep.
However, many people with dementia continue to live fulfilling lives after their diagnosis. This is particularly true if they have the right support, remain socially active for as long as possible and keep up with their interests and hobbies, or take the opportunity to try new ones.
How dementia might feel emotionally
“When you’re diagnosed with dementia, you can feel so, so alone. What you need is someone to tell you it’s going to be okay. Tell you there’s a whole lot of living to be done.”
– Sylvia, who lives with Alzheimer’s disease
“When I was first diagnosed with dementia, I felt angry. It didn’t seem fair. But that changed when my wife Christine and I booked an appointment with Admiral Nurse Helen. She explained in really simple terms what dementia was and how it was affecting my brain. Instead of fighting what was happening, I accepted it. Helen gave us the confidence to carry on doing things that we enjoy.”
– Andy, who has young onset dementia
“I was fed lots of doom and gloom when I was diagnosed. That was until Admiral Nurse Liz arrived, and showed me that there is life after dementia. I feel like dementia has opened a lot of doors and opportunities for me that I wouldn’t have otherwise noticed.”
– Peter, who has Alzheimer’s disease
Dementia and sensory issues
Dementia can affect the senses, including how a person perceives things visually and responds to sensations like sound, touch and smell. For example:
- A person with dementia might misperceive what they see – a dark rug on the floor might look like a hole, or a reflection in the mirror might appear to be a person or animal in the home
- Loud or sudden noises may cause fear and distress
- Noisy and busy environments might cause overstimulation and make it harder to concentrate on conversations
- Smells might be misinterpreted as something else – for example, the person might think a food smell from the bin is a gas leak
- The person might be more sensitive to touch
- There may be changes in taste, so foods the person has always enjoyed now taste unpleasant
What sensory overload feels like for people with dementia
Sensory overstimulation can be very distressing for a person with dementia, especially if they can’t remove themselves from the situation or communicate how they are feeling. They may show their distress in ways like:
- crying, shouting or swearing
- pacing
- shadowing their carer and not wanting to be left alone
- self-soothing behaviours like fidgeting or rocking
- resisting support, especially with self-care
- trying to leave their home
- becoming verbally or physically aggressive
“I’d always had my own office at work, which suited me, but soon after my diagnosis of Lewy body dementia I got moved into an office with other people and with hardly any natural light and from that point on things just went downhill.”
– Phil, who retired soon after his young onset dementia diagnosis
What hallucinations and delusions feel like for a person with dementia
Hallucinations in dementia
Some people with dementia have hallucinations, where they experience something that is not really happening, for example:
- hearing voices or sounds (auditory hallucinations)
- seeing things that aren’t there (visual hallucinations), often people or animals – this is more common in people with Lewy body dementia
- feeling physical sensations that are not real, for example feeling bugs crawling on their skin
Hallucinations feel completely real to the person who is experiencing them, and may be annoying, unsettling or frightening.
Delusions in dementia
Delusions are false beliefs and are common in people with dementia. The person is unlikely to be able to think rationally about whether these delusions are true, and trying to provide them with a rational explanation may increase their frustration and distress.
Common delusions include:
- thinking that someone is trying to steal from them
- thinking that someone is trying to harm them
- believing that their partner is being unfaithful
- thinking they’re living in the past – for example, that they still go to school or work
Delusions can be very powerful and upsetting, especially if the person believes someone close to them can no longer be trusted.
How do I tell people I have dementia?
Telling others that you have been diagnosed with dementia can feel overwhelming, but sharing your news with people close to you can help them understand what is happening and offer support.
When to tell others
- Choose your own timing: there is no right or wrong time to share your diagnosis, so tell people when you feel ready
- Plan ahead: think about who you want to tell and how you might do it
- Start with those closest to you: many people find it helpful to talk to family or close friends first
- Consider writing things down or rehearsing what you want to say
If you work, it’s a good idea to tell your employer sooner rather than later as you are entitled to reasonable adjustments to help you continue in your job
How to tell people
- Be honest and open: share how you’re feeling and what your diagnosis means for you
- Let people know if you want practical support or just a listening ear
- Use clear, simple language: explain what dementia is and how it might affect you, but don’t feel pressured to provide all the answers
- Share information: consider giving people our leaflets or directing them to our website or other reliable resources so they can learn more
- Let people react in their own way. Some may be shocked, sad, or worried; others may feel relieved to understand what’s been happening
“I speak about my dementia diagnosis very openly. I’m not embarrassed by it. If you break your leg and you need crutches, you’re not ashamed about it. We need to talk about dementia in the same way.”
– Andy, who lives with young onset dementia
Recognising when extra support is needed
As dementia progresses, the person’s needs will increase and they will need more help with daily life, although with the right support, many people can continue to live safely and independently in their own home for some time.
If you are considering whether extra support is needed, read our information on living alone with dementia, finding care and support at home, and considering a care home.
“For some years, I tried to put off arranging carers for myself. I have always found it much easier to provide care than to accept it. However, as I’m living on my own, it’s a personal hurdle I’ve had to overcome. At the moment, I accept help twice a week.”
– Julie, who lives alone with dementia
Where to find help
If you are living with dementia, it’s essential to have support. This could come from:
- family members and friends
- your GP
- a counsellor or therapist – your GP can refer you, or you can refer yourself for talking therapy
- support groups, online or in person
Our Admiral Nurses are here to answer any questions about dementia and offer practical advice and emotional support – you can contact our Helpline or book a video or phone appointment.
