By the time I went to university in 2016, Dad wasn’t working anymore. He needed a lot of personal care, and I would help him get dressed and cook for him. I had to grow up very quickly.  

Izzy: My dad had a brain haemorrhage in 2016 when I was 14. He experienced a traumatic brain injury and had open brain surgery. He seemed to recover well, but in 2022, we noticed he had some cognitive issues. Dad was diagnosed with young onset vascular dementia at 54 years old.

Dad was very independent when he first got diagnosed, but in recent months, he has started to need lot more personal care. My mum, sister and I all work full-time and my brother lives in Canada. We realised it was too much to care for dad full-time at home. He now attends a respite centre five days a week from 8am to 4pm so that we can balance caring and working between us. 
 

“I’ve struggled with the change in our relationship” – Izzy 

Cici: My dad was my best friend. He was always there on sports day, cheering the loudest. All the hobbies I have now are because dad planted the seeds and nurtured them. He introduced me to adrenaline sports and taught me how to scuba dive. But Dad became a person that I didn’t recognise anymore, and that made me feel angry for a long time. It felt so unfair.  

Suddenly I took on the role of being a carer. I was making sure my younger brother was ready for school and had a packed lunch; making sure Dad was taken care of. I had to decide whether to continue working to contribute financially, or to stay at home and care for dad full-time. It felt like I was all over the place.  

Cici dancing with her dad

When I meet new people, they often think I’m older than I am, not because of how I look, but because of how I carry myself. I definitely think that comes from being a young carer. I adopted my caring role as part of my identity.  

Izzy: I’ve really struggled with the way my relationship with Dad has changed. Before his diagnosis, we had a great father-daughter relationship. And then things suddenly changed, and my whole world caved in.  

I have also found being the oldest of three hard as I wanted to protect my younger siblings, who are now 19 and 21, for as long as I possibly could. But since they have found out about Dad’s dementia, we have been good at sharing responsibilities as a family. Siblings are so important and we have to stick together. 

Izzy and her dad at graduation

“Friends were scared of saying the wrong thing” – Cici 

Cici: I struggled with friendships at school and got bullied because I didn’t go out and socialise. I felt like nobody understood what I was going through or why I couldn’t go to parties like everyone else. I only had two friends who really understood Dad’s condition and would come over to the house and engage with him. Even though he had met them many times before, he always asked who they were, but they understood why. 

During my first year at university, I cried myself to sleep many nights. I was in Edinburgh, far away from my family in London. I felt guilty that my mum and brother were at home caring for Dad and I wasn’t there to help. I noticed that friends were so scared of saying the wrong thing or showing up in the wrong way that they just didn’t show up at all. I felt like I needed people to talk to but always ended up internalising everything. 

Izzy: When I found about Dad’s diagnosis, I told all my close friends straight away. They have spent a lot of time around Dad and were open and understanding. I signed up for a 10K run for Dementia UK and a few of my friends came to support me at the finish line. I’m lucky that I have a really good support network. 

I think the most important friends are the ones that don’t try to understand what you’re going through. They are just there for you when you need to shout or cry. They accept you as you are, even when you aren’t your best self.  

Izzy and her family

“It’s difficult to look ahead to the future” – Izzy 

Cici: Sadly, Dad passed away in 2021, but I felt like I was grieving him while he was still here. I would occasionally get glimmers of hope when he had a lucid moment and I could see he was still there. But I lost him piece by piece and always knew where the road was leading.

There are some moments I wish I could have back. Dad would ask me to watch ‘Gladiator’ with him, even though he sometimes watched it five times a day. I think my family can probably quote the whole film line by line! But I wish I could go back and hold his hand and watch it with him again. 

Cici and her family

Izzy: My dad doesn’t have lucid moments, which is really hard as we don’t get any glimpses of him. It’s just a constant decline. It’s difficult to look ahead to the future, so I have to take each day as it comes. It’s just one foot in front of the other at the moment. Dementia changes so quickly; you just have to keep your head down and keep going.  

 “I found Admiral Nurses and realised there is support out there” – Cici 

Cici: When I was looking online for support for young carers, I kept seeing stories of people who were in their 30s. Although they were young adults, I wasn’t able to relate to them as I was so much younger. It actually made me feel even more isolated. What I really needed was community and the reassurance that there were other young carers like me going through similar experiences.  

I found out about dementia specialist Admiral Nurses when I started working with Hannah Gardner, Dementia UK’s Consultant Admiral Nurse for Children and Young People. That was when I realised that there is support out there. I just hadn’t accessed it before; I didn’t even know that it existed. If I’d have had that support when I was caring for dad, it would have made a huge difference. Just having other young carers to talk to helps you feel less alone.  

Izzy: As a family, we’ve started to discuss the possibility of finding a care home for Dad. I turned to the Dementia UK website for some support and could see straight away that there are resources specifically on how to find the right care home for someone under 65. It’s reassuring to know that the information is there when we need it.

Cici and Izzy

“I hope sharing our experience helps other young carers” – Cici 

Izzy: The biggest lesson I’ve learnt from all of this is that life is too short. You should book the trip and do the thing you’ve always wanted to do.  

We have decided to go on a family holiday to spend some quality time together. Dad is booked in for two weeks of respite and it’s difficult to work through the feelings of guilt, but we know it’s important to have a break and live for ourselves a little when we can.

Cici: I agree. If you want to do something, then just go for it, no matter how crazy it seems.  

I hope having this conversation and sharing our experiences helps other young carers understand that they’re not alone. 

The post Cici and Izzy’s story – “I hope sharing our experience helps other young carers” appeared first on Dementia UK.

This page, written by our dementia specialist Admiral Nurses, explores the symptoms, causes and possible treatment of Alzheimer’s disease.

What is Alzheimer’s disease?

Alzheimer’s disease is a type of dementia that mostly affects older adults, but it can also develop in younger people under the age of 65, when it is known as ‘young onset Alzheimer’s disease’. It causes problems with memory, thinking and behaviour. As a progressive condition, it will affect more and more aspects of a person’s life over time.

How does Alzheimer’s disease differ from other types of dementia?

There are many different forms of dementia, all of which are progressive conditions that cause damage to the brain.

Unlike other types of dementia, Alzheimer’s disease is thought to be caused by the abnormal build-up of two proteins in the brain, ‘amyloid’ and ‘tau’. These form structures called ‘plaques’ and ‘tangles’, which damage the brain cells. Alzheimer’s disease also reduces the levels of chemical messengers in the brain (‘neurotransmitters’) which makes it harder for messages to pass between brain cells.

As Alzheimer’s disease progresses, brain cells continue to die and parts of the brain shrink, and the levels of neurotransmitters decrease further.

Different forms of dementia have different symptoms, but in Alzheimer’s disease, the most common early sign is difficulty with memory.

How common is Alzheimer’s disease?

Alzheimer’s disease is the most common form of dementia, affecting one in 14 people over the age of 65, and one in six people over the age of 80.

It can also affect younger people and is the most common form of young onset dementia (where symptoms develop before the age of 65).

Common signs and symptoms of Alzheimer’s disease

It can be helpful to think of dementia progressing in three stages – early, middle and late stages.

Early signs of Alzheimer’s disease

The most noticeable early sign of Alzheimer’s disease is usually difficulty with memory, especially short-term memory. The person might:

• forget recent events or conversations (but they might have clear memories of the past)
• misplace items or put them in the wrong place (eg putting their keys in the fridge)
• forget appointments
• forget the names of people, objects or places
• struggle to find the right words
• repeat themselves

Other early symptoms may include:

• mood and personality changes
• feeling unsettled by unfamiliar situations or changes in routine
• becoming withdrawn
• difficulty making decisions

In the early stages of Alzheimer’s disease, the symptoms may be mild, but they can still be extremely frustrating for the person and those around them, especially if they do not understand why the changes are happening.

Symptoms of middle stage Alzheimer’s disease

In the middle stages, symptoms may include:

• increasing confusion and disorientation, eg getting lost in familiar places
• delusions (believing things that are not true, eg that a family member is trying to steal money from them)
• hallucinations (seeing or hearing things that are not there, eg a stranger in their home)
• obsessive or repetitive behaviours
• problems with speech and language
• disturbed sleep
• difficulty with spatial awareness, eg judging speed and distances

Symptoms of late stage Alzheimer’s disease

In the late stages of Alzheimer’s disease, new symptoms may develop, including:

• distressed, frustrated or angry behaviour as the person struggles to express themselves
• incontinence
• difficulty eating and swallowing
• loss of speech
• mobility problems
• weight loss
• becoming increasingly weak and frail
• frequent infections
• bouts of delirium

How quickly does Alzheimer’s disease progress?

Alzheimer’s progresses gradually; however, each person’s experience is different and it is impossible to predict how quickly they will deteriorate.

Getting an accurate diagnosis of Alzheimer’s disease as early as possible is important, as treatments to help slow its progress tend to be most effective in the early stages. A timely diagnosis also means support can be put in place to help maintain the person’s quality of life.

There is currently no cure to stop or reverse the disease.

Causes and risk factors

There are a number of causes and risk factors for Alzheimer’s disease. Some are unavoidable, but others could be reduced through lifestyle changes. Some of the causes include:

Age

Age is the biggest risk factor for developing Alzheimer’s disease. The older someone is, the more likely it becomes, but it can also occur in younger people under the age of 65.

Underlying health conditions

Some health problems can raise the risk of getting Alzheimer’s disease. These include heart and blood vessel issues such as high blood pressure and diabetes as well as obesity. People with learning disabilities, particularly Down’s syndrome, are also more likely to develop Alzheimer’s disease.

Family history

In rare cases, Alzheimer’s disease is caused by a genetic fault that runs in families, but this accounts for fewer than 1% of all people diagnosed with the condition. Alzheimer’s disease is more likely to be inherited in people whose parents developed the condition at a very young age.

Read more about genetic forms of dementia.

Sex and ethnic background

Women are slightly more likely to develop Alzheimer’s disease than men, and there is some evidence that people from African-Caribbean and South Asian backgrounds may be more at risk.

Lifestyle

Although age is the biggest factor for Alzheimer’s disease, studies suggest that the way we live can also influence our chances of developing this and other forms of dementia. Here, we list some of the lifestyle factors that could increase the risk.

Diet

A diet high in processed foods, sugar and unhealthy fats may increase the risk of Alzheimer’s disease because it can lead to conditions that affect the heart and circulatory system (cardiovascular conditions) and reduce blood flow to the brain.

The risk of developing these conditions and others than are linked to dementia can be reduced by eating a healthy, balanced diet. The NHS Eatwell Guide can help you understand which foods to eat to improve and maintain your physical and mental health.

There is also a link between alcohol and developing dementia so it’s important to keep drinking within the recommended limits.

Exercise

A lack of regular exercise can contribute to the risk of developing Alzheimer’s disease, as well as other forms of dementia. Exercise improves heart health and helps blood flow and oxygen delivery to the brain, which supports cognitive function.

Smoking

Smoking increases a person’s risk of developing dementia by damaging blood vessels and reducing blood flow to the brain. This can increase the risk of Alzheimer’s disease. Some studies show that smoking increases the risk of developing dementia by 30-50% but quitting smoking, even later in life, can reduce the risk of cognitive decline and improve overall brain health.

Sleep

It’s thought that a lack of sleep, or poor quality sleep, can lead to a build-up of proteins in the brain, which may increase the risk of Alzheimer’s disease. How much each person needs will vary, but six to eight hours’ uninterrupted sleep is ideal for most people.  The NHS has information on improving sleep.

Reducing your risk of Alzheimer’s disease

Although there is no guaranteed way to prevent Alzheimer’s disease, certain steps may help reduce the risk:

• stopping smoking
• keeping alcohol consumption within recommended limits
• eating a healthy, balanced diet with at least five portions of fruit and vegetables a day
• aiming to exercise at least five days a week for 30 minutes or more at a time
• ensuring you take any medication prescribed for diabetes, heart conditions, depression and other physical/mental health problems
• asking your GP for regular health checks, including blood pressure checks and blood tests
• having your hearing and eyesight checked regularly
• staying mentally and socially active, for example, by taking part in group activities, volunteering, reading or learning a new skill like a language or photography

Diagnosing Alzheimer’s disease

It may take several appointments and tests over a number of months to get a diagnosis of Alzheimer’s disease. This is particularly true for younger people, who typically face a much longer wait to get a diagnosis than older people.

If dementia is diagnosed early, there may be more treatment options, and support can be put in place sooner.

Medical tests

The first port of call if you are worried about symptoms of Alzheimer’s disease in yourself or someone else is the GP. They will rule out any underlying physical or mental health issues that may be contributing to the symptoms, many of which can be treated. These include depression, anxiety, vitamin deficiency, diabetes, hormonal conditions or menopause. They will ask the person:

• what their symptoms are
• when they started
• how they affect their daily life
• their family history
• their medical history

It is a good idea to keep a record of symptoms, triggers and how they affect the person to show the GP. The GP should carry out some simple physical tests, such as a blood pressure check, and refer the person for blood tests. They may request an ECG (a check of heart rhythm) and a brain scan.

Cognitive assessments

A short memory and concentration test (often known as the ‘mini mental state examination’) should be carried out by a GP as part of the assessment. This may include:

• stating the day, date and year
• naming pictures of some common objects, eg keys, kettle
• remembering and repeating a list of items
• completing a simple drawing, eg putting numbers on a clock face

If the tests rule out other conditions that may be causing the person’s symptoms, the GP should refer them to a specialist memory clinic for more detailed assessments. These may be carried out by a nurse, psychiatrist, neurologist or elderly care specialist.

Brain imaging

The person may also have further scans such as an MRI or CT scan – these produce detailed images of the brain and may show changes associated with Alzheimer’s disease or other conditions.

Preparing to speak to the doctor

It is a good idea to prepare for the appointment to ensure you get the most out of your time with the healthcare professional.

• If there is a particular GP you would like to see you can request this, although it may mean waiting longer for an appointment.
• Write down the most important things you want to discuss. If there are more than two or three things, you may wish to book a double appointment
• Keep a record of any changes in symptoms or behaviour
• Make a list of any medications being taken, including prescribed medications, over-the-counter medications, vitamin supplements and natural remedies
• If you are seeing the GP about your own symptoms, ask someone to accompany you – this may make you feel more comfortable, and they can share their own thoughts about the situation
• If you need a chaperone or interpreter, inform the surgery in advance
• If someone close to you is seeing the GP about their symptoms, it is a good idea to go with them so you can discuss anything you have noticed and offer support

Find out how to best prepare for a GP appointment.

Treatment for Alzheimer’s disease

There is currently no cure for Alzheimer’s disease. However, for some people, medication can improve the symptoms and slow its progression.

Medication

The main medications for Alzheimer’s disease are donepezil, rivastigmine and galantamine. These work by increasing the levels of a chemical called acetylcholine in the brain, which helps the brain cells communicate with each other. They are only effective in the early to middle stages of Alzheimer’s disease, and they depend on the person being physically fit and well, and able to remember to take the medication at the same time each day.

Another medication, called memantine, may be prescribed for moderate to severe Alzheimer’s disease, or if the person cannot tolerate the other treatments.

Cognitive therapy

Cognitive stimulation therapy (CST)

CST is a type of therapy that involves taking part in activities to improve memory, language skills and problem-solving abilities. It often takes place in a group, which can also provide opportunities to socialise and share experiences, but may be offered one-to-one. The memory clinic will be able to tell you if this is available in your area.

Cognitive rehabilitation

This involves working with a specialist – usually an occupational therapist – along with a family member or friend to find ways to manage particular tasks, such as using a mobile phone or cooking a meal. The aim is to get the parts of the brain that still work well to help the parts that do not. It can also be personally satisfying to accomplish a task that the person finds difficult.

Reminiscence and life story work

Many people with Alzheimer’s disease have difficulty with short-term memory, but longer-term memories may remain intact for some time. Reminiscence and life story work focus on skills, achievements and happy memories, and can improve mood and wellbeing.

Reminiscence work involves the person talking to a family member, friend or professional about their past, often using prompts such as photos, music or favourite possessions.

Life story work involves compiling a record of the person’s life, for example:

• personal details
• important relationships with family and friends
• their childhood history
• past and present employment
• important people and places
• key events from their past
• likes and dislikes
• spiritual/cultural beliefs

Life expectancy for people with Alzheimer’s disease

On average, people with Alzheimer’s disease live four to eight years after diagnosis, but some can live as long as 20 years or more. The life expectancy for people with Alzheimer’s disease varies widely depending on many factors, including age and the stage of the disease at diagnosis, other medical conditions and overall health.

It is impossible to predict the exact length of time someone may have; instead, focus on maintaining quality of life/enjoying time together rather than speculating how long they may have left.

How does Alzheimer’s disease cause you to die?

As Alzheimer’s progresses, damage to the brain affects critical functions such as breathing, mobility and swallowing. This can lead to complications like falls, infections such as pneumonia, and malnutrition. Many people with Alzheimer’s disease become increasingly frail and are unable to recover from these complications.

Living with Alzheimer’s disease

Living with Alzheimer’s disease can be difficult for the person with the diagnosis and those around them, especially as the symptoms progress. These tips may make living with the condition easier:

• Find out about local dementia services like support groups, day centres and memory cafés
• Try to keep to a daily routine to provide familiarity and stability
• Stay socially connected by continuing current activities or trying new ones
• Carry a form of identity with details of the diagnosis in case of getting lost or needing assistance outside the home – this could be sewn into a coat or bag
• A sunflower lanyard from the Hidden Disabilities store or a similar badge/ID card can be helpful to alert members of the public that the person may need support

Supporting someone with Alzheimer’s disease

While the symptoms of Alzheimer’s disease always worsen over time, a good routine and support network can help the person with the diagnosis maintain their independence and quality of life for as long as possible.

• Complete a Herbert Protocol form: a record of important information about the person that can help the police locate them if they go missing
• Look into assistive products that make daily living easier, such as medication organisers, dementia clocks and personal fall alarms
• Take a tour around the person’s home to identify possible hazards – find out how to make the home safe and comfortable
• Request a needs assessment (for the person with dementia) and a carer’s assessment (for their carer) to establish what equipment and support is available
• Encourage the person to carry on with their daily activities as far as possible to help them maintain their skills
• Be realistic about your ability to care for the person – in the middle to late stages of Alzheimer’s disease, it may be necessary to use paid carers or consider a move into a care home

Common misconceptions

Some common misconceptions about getting a diagnosis of Alzheimer’s disease are:

• You have to stop driving immediately
• You have to give up work
• You will immediately lose the ability to make decisions (loss of capacity)
• Someone else will have to manage your finances
• Alzheimer’s disease only affects older people
• Everyone with Alzheimer’s disease will have to move into a care home

While these things are likely to happen as dementia progresses, people in the early stages of Alzheimer’s disease may be able to continue with many of their usual activities with minimal changes.

The post Alzheimer’s disease appeared first on Dementia UK.

Dementia causes changes in memory, thinking, personality and behaviour, but symptoms vary depending on which type the person has. Getting a diagnosis of the specific type of dementia means people can get the right support to help them live better with the condition.

Here’s what you need to know about some of the most common forms of dementia, including Alzheimer’s disease, vascular dementia and frontotemporal dementia.

The post Types of dementia appeared first on Dementia UK.

What is autism?

Autism is a lifelong difference in how a person experiences and interacts with the world. It can influence how someone thinks, feels, communicates, builds relationships, adapts to change and responds to their surroundings.

Autism is not a learning disability, although some autistic people may also have a learning disability.

Communication styles and preferences

Many autistic people prefer communication that is clear, precise and direct. Some may be non-speaking, non-verbal or prefer to communicate in other ways such as writing or using signs or pictures.

Relationships and social situations

Social situations can sometimes feel confusing, overwhelming or tiring for autistic people. This could be because of difficulties with reading social cues, interpreting unspoken rules or processing lots of information at once. Some people may need more time alone, or space to recharge after social interactions.

Routines

Many autistic people value routines, clear plans and predictable environments. Change can be stressful or difficult. Even small changes, like moving mealtimes or rearranging furniture, could have a big impact.

Sensory experiences

Bright lights, loud sounds, strong smells, certain textures or changes in temperature can feel overwhelming or even painful for autistic people. This can affect how someone feels and responds to sensory stimulation.

What is dementia?

Dementia is an umbrella term for a range of progressive conditions that affect the brain. There are many different types; the most common are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed dementia.

Each type of dementia stops a person’s brain cells (neurones) working properly in specific areas. Common symptoms include difficulties with memory, confusion and problems with speech and understanding that get worse over time.

Dementia is most common in people over the age of 65, but it can also affect younger people. This is known as ‘young onset dementia’.

Is there a link between autism and dementia?

As with non-autistic people, some autistic people will develop dementia. Both conditions can affect similar areas, such as communication, decision-making and behaviour.

It is not currently known whether autistic people are at greater risk of dementia. Some studies have suggested that autistic people are more likely to be diagnosed with dementia than non-autistic people, while others have found no difference.

High-functioning autism and dementia

Being described as having ‘high-functioning autism’ does not mean the person does not experience challenges or need support related to their autism. It may simply mean that they are able to ‘mask’ or ‘camouflage’ their autism traits so effectively that their differences and difficulties go unnoticed.

There is currently no evidence that autistic people who are described as ‘high functioning’ are any more or less likely to develop dementia than non-autistic people, or that their dementia symptoms are any more or less challenging.

Autism and dementia symptoms

Autism and dementia can both affect similar areas, such as communication, decision-making and behaviour. This can make it hard to tell whether symptoms and changes are due to autism, dementia or both.

For example:

• An autistic person might already find words or communication challenging, so new language difficulties could be missed
• If someone masks their autistic traits, dementia may make this harder, revealing behaviours that seem new or unexpected
• Difficulties with changes in routine, emotional responses or social understanding might be wrongly attributed to autism, when they could be signs of dementia

Every person is different, so how symptoms present and develop will vary. It is important to know what is typical for the autistic person, and to seek help if something seems different or unusual.

Unlike autism, which is a lifelong difference in how someone experiences the world around them, dementia is progressive and always gets worse over time.

Diagnosing dementia in an autistic person

If you notice any changes in yourself or the person you support or care for, it is important to book an appointment with a GP. These changes might include:

• New or worsening memory problems, such as forgetting events or repeating questions
• Difficulties with concentration, problem-solving or decision-making
• Struggling more than usual with communication, for example finding the right words or following conversations
• Changes in mood, such as becoming more anxious, withdrawn or irritable
• Behaving in ways that are unusual or out of character
• Needing more help with daily tasks like cooking, shopping or getting dressed

Symptoms like these do not necessarily mean a person has dementia – they could be caused by stress, burnout, infection, medication side effects or another health issue. However, it is important to seek help if you are concerned.

Diagnosing dementia in autistic people can be complex. Traditional memory tests are not suitable for everyone and there are no specific tests for diagnosing dementia in autistic people. A thorough and sensitive assessment is important and should include input from people who know the person well and, if possible, professionals who have a good understanding of both autism and dementia.

What to expect at the GP

At the appointment, the GP should ask the person about:

• the problems they are having
• when they started, and if they started suddenly or gradually
• how they affect the person’s everyday life
• whether there is any family history of dementia

The GP should carry out some basic memory tests and a physical examination, and should also arrange blood and urine tests to rule out other possible causes of the symptoms.

To help your GP, you can:

• Write down any changes or concerns beforehand
• Bring your NHS health passport, if you have one, to your appointment: this will help the GP understand your needs better, especially if communication is difficult or you are in a new environment
• Bring someone who knows you well to your appointment to help with communication and explaining the symptoms that are causing concern
• Take notes, or ask the person you are with to take notes, or ask for a written summary

If, after an initial assessment, the GP believes the symptoms may be caused by dementia, they should make a referral to a memory clinic for more detailed tests.

Autistic people can request reasonable adjustments to make healthcare appointments easier and more accessible, such as having longer GP appointments or seeing a health professional with training in autism-informed care.

If you experience any difficulties requesting reasonable adjustments, you can contact Patient Advice and Liaison Service (PALS): a free service to help you resolve concerns about your NHS treatment. Your GP surgery can provide details. If you prefer, you can contact an independent advocacy organisation like VoiceAbility.

Living with autism and dementia

The right treatment, support and coping strategies may help to manage the symptoms of dementia in an autistic person and make daily life easier. However, there is no one-size-fits-all approach to supporting someone with dementia, so it may involve some trial and error. Additionally, the person’s support needs and preferences may change as their dementia progresses.

Wherever possible, include the person in decisions about their care and support.

These strategies might help:

Use clear and direct communication

Using simple language, gestures, written notes or visual aids (such as pictures, symbols or colour-coded schedules) can make things easier to understand. Our tips for communicating with a person with dementia may be useful.

Keep routines predictable

Many autistic people and those with dementia find comfort and stability in routine. Try to keep daily activities, surroundings and people as consistent as possible.

Create a calm, sensory-friendly environment

Autism and dementia can both affect how someone experiences sound, light, textures and other sensory input. Adapt the environment to the person’s preferences where possible. This could include using soft lighting, offering quiet spaces and making sure clothing feels comfortable. Read our advice on making the home safe and comfortable for a person with dementia.

Support the person’s emotional wellbeing

Many autistic people experience anxiety, for example in social situations or overstimulating environments. Dementia may also increase a person’s anxiety, leading to emotional responses like frustration or withdrawal. Being calm, patient and reassuring may help to reduce distress. Activities like listening to music, engaging with nature or taking part in hobbies can help provide calm, purpose and a sense of enjoyment.

Notice changes in behaviour or needs

It may be hard for the person to explain or show how they feel. Small changes in mood, appetite, sleep or behaviour could indicate discomfort, pain or distress. Knowing what is usual for the person makes it easier to spot when something is wrong.

Involve people who know the person well

Family, friends and long-term carers can provide support for the person’s preferences, routines and behaviours. Trusted people and familiar faces are especially important as dementia progresses.

Create a personal profile document such as a ‘life story’

This outlines the person’s history, likes and dislikes, routines and needs, and will help health and social care professionals understand them better. Read our advice on creating a life story, which includes a template.

Find out about financial benefits and support

Autistic people and those with dementia may qualify for disability benefits such as Attendance Allowance or Personal Independence Payment (PIP), which could help with the additional costs of living with a disability. Read our advice on financial and legal sources of support for a person with dementia.

Start planning for the future

This is known as ‘advance care planning’ and ensures the person’s views and preferences – for example, their wishes around future care – are understood and recorded. It means any decisions can be taken in their best interests if they cannot make these decisions or express their wishes themselves.

Connect with people in similar situations

Support groups, peer networks and online communities for autistic people and people with dementia can provide opportunities to share experiences, advice and encouragement. You can often find local listings on noticeboards at your library, GP surgery, community centre or places of worship.

 Sources of support

To speak to a specialist Admiral Nurse about autism and dementia or any other aspect of dementia, please call our free Helpline on 0800 888 6678, email helpline@dementiauk.org or book an online or phone appointment.

You may also find these resources useful:

• Understanding autism and dementia
  A guide for autistic people, their families and anyone who supports them
• Advance care planning (including template)
• Attendance Allowance
• Financial and legal sources of support
• Getting a diagnosis of dementia
• Getting the best out of GP and other health appointments
• Learning disabilities and dementia
• Mental capacity and decision-making
• Types of dementia
• What is young onset dementia?

Autistica resources

Autistica is a research and campaigning charity that funds and shapes autism research and policy. Its mission is to create high quality evidence and make breakthroughs that enable autistic people to live happier, healthier and longer lives.

• Dementia UK and Autistica are collaborating to raise awareness of dementia and autism and provide information and support for autistic people living with dementia, those who care for them, and health and social care professionals.
• Tips Hub: a mobile app with autism tips and resources to make everyday life easier
• Molehill Mountain: a mobile app to help autistic people understand and self-manage anxiety

Other resources

• Carer’s Allowance
• Care needs assessment
• Citizens Advice
  Free, confidential advice on money, benefits, housing, legal rights and more
• Find local authority Adult Social Care Services
  For help with arranging care needs assessments, support for daily living and access to community services
• NHS health passport
• Patient Liaison and Advice Service (PALS)
  Free, confidential advice, support and information on NHS health matters
• VoiceAbility
  Advocacy around health, care and wellbeing

Recent studies on autism and dementia

In recent years there has been a lot of research into possible links between autism and dementia. Some studies have suggested that dementia is more prevalent in autistic people, particularly in mid-life. This may be because autistic people are at greater risk of other factors that may increase the risk of developing dementia, for example depression and social isolation.

However, other studies have found that rates of dementia in autistic people are no higher than in non-autistic people.

More research is needed to establish whether there is a link between autism and dementia.

Autism and dementia webinar

The webinar focuses on the care needs of autistic people living with dementia, and how the interaction between autism and dementia calls for personalised care and support.

Autistic people living with dementia often face distinct challenges in accessing appropriate care and support. These challenges may stem from a lack of understanding about how autism and dementia interact, and how best to adapt care to meet individual needs.

• How can health and care professionals identify signs of dementia in autistic people, and ensure these are not overlooked or misinterpreted?
• How can care and support be adapted to effectively meet the unique needs of autistic people living with dementia?
• How can organisations work to improve awareness and develop practical guidance for autistic people with dementia, their families, and professionals?

This webinar features Dr Madeleine Walpert, Deputy Head of Research and Publications at Dementia UK; Dr Gavin Stewart, Senior Postdoctoral Research Fellow, King’s College London; and Dr Chris Knifton, Admiral Nurse and Associate Professor of Neurocognitive and Neurodevelopmental Education, De Montfort University.

The post Autism and dementia appeared first on Dementia UK.

This can cause stroke-like symptoms, but they are short-lived – usually between a few minutes and a few hours – and typically go within 24 hours.

The main signs and symptoms of a TIA

The main symptoms of a TIA can be remembered with the word FAST:

• Face: the face may have dropped on one side; the person may not be able to smile, or their mouth or eye may have dropped
• Arms: the person may not be able to lift both arms and keep them raised because of weakness or numbness in one arm
• Speech: the person’s speech may be slurred or garbled, or they may not be able to talk at all, despite appearing to be awake. They may also have problems understanding what you’re saying to them
• Time: it’s time to call 999 immediately if you see any of these signs or symptoms

Other symptoms of a TIA:

• weakness/numbness of one side of the body
• sudden changes in vision, such as blurred or loss of vision
• sudden headache
• confusion
• dizziness
• vertigo
• being sick
• difficulty understanding what others are saying
• problems with balance and coordination
• difficulty swallowing (dysphagia)

The link between TIAs and dementia

Having a TIA can increase your risk of developing dementia, especially vascular dementia. Having a single TIA does not usually cause dementia, but having repeated TIAs over time can lead to vascular dementia. This is because they cause small but widespread damage to the brain.

People living with other types of dementia may also be at risk of a TIA or stroke, so if you notice symptoms, it’s important to seek medical advice and treatment.

Many of the risk factors for TIAs and dementia are similar, including high blood pressure, smoking, a poor diet and a lack of exercise, so if you have lifestyle factors that increase the risk of TIAs, you may also be at a greater risk of developing dementia.

TIAs can also cause a progression of dementia symptoms.

Can a TIA bring on dementia?

People who have experienced multiple TIAs are at greater risk of developing vascular dementia, although a single TIA is unlikely to trigger the condition. You can reduce the risk by taking any medication you are prescribed according to the instructions, maintaining a healthy blood pressure, not smoking, keeping alcohol consumption within the recommended limits, avoiding stress, staying active and eating a healthy, balanced diet.

What to do if you have concerns

It can be difficult to know whether you’re having a TIA or a stroke, so if you notice any possible signs in yourself or someone else, it is important to call 999 immediately and explain your symptoms. Don’t ignore them, even if they disappear quickly.

If you have a suspected TIA you should be seen in hospital, where your symptoms will be assessed. This may include a brain scan. Depending on the outcome of the assessments, you may be referred to a TIA or stroke clinic.

A TIA can be a warning sign that you may be at risk of having a stroke, so doctors can advise how to reduce this risk with medication and investigations.

If you suspect you may have had a TIA in the past but didn’t seek treatment, make an urgent appointment with your GP. They may refer you for a hospital assessment.

People who experience a TIA are at increased risk of developing depression. Seek advice from your GP if you have concerns about your mood after experiencing a TIA.

Reducing the risk of a TIA

There are steps that you can take to reduce your risk of TIA:

• Follow a healthy diet including at least five portions of fruit and vegetables a day
• Limit the amount of salt and processed foods in your diet
• If you smoke, make every effort to stop – your GP can offer advice
• Take regular exercise: a total of 150 minutes across the week is recommended for most people
• Keep your alcohol intake within the recommended guidelines (14 units per week)
• Take steps to reduce stress
• Take any medication as prescribed
• Make sure you manage health conditions such as atrial fibrillation, high blood pressure, high cholesterol and diabetes by taking any medication you are given and attending regular reviews

Driving after a TIA

If you drive a car or motorbike, you must stop driving for at least one month after a TIA or stroke and can only restart only when your doctor or healthcare professional tells you it is safe.

You do not need to tell the Driver and Vehicle Licensing Agency (DVLA) if you have had a TIA and recovered, but you do need to tell them if, after one month, you are still experiencing:

• weakness in your arms or legs
• vision problems related to the TIA
• problems with balance, memory or understanding

You must also tell the DVLA if:

• you have had any type of seizure
• you needed brain surgery
• your doctor thinks it is unsafe for you to drive

If you drive a bus, coach or lorry, you do have to notify the DVLA if you have had a TIA or stroke, and you must stop driving them for at least a year.

GOV.UK has more information about telling the DVLA about a medical condition or disability. In Nothern Ireland, visit Driving after stroke, cerebral thrombosis, amaurosis (nidirect).

If you have dementia, you are legally obliged to tell the DVLA/DVA about your diagnosis.

The post What is a transient ischaemic attack (TIA)? appeared first on Dementia UK.

My grandparents settled in Leicester and shifted between whatever jobs they could find, including hotel and factory work. My grandma became well-known at her local church, where there was a large Barbudan community. Her resilience and determination have become part of who I am today.

My mum, her eldest daughter and who was only 11 at the time, was still living in Barbuda with my great-grandparents. I can’t imagine how painful it must have been for my grandma to have a fractured family. When my grandparents finally established themselves, my mum joined them in Leicester. She flew across alone, completely unaware of what she was coming to.

We didn’t know where to turn

Sadly my mum passed away when I was 12. My uncle also died in a car accident the same year, so my grandma lost two of her children within six months. At a point in her life when she should have been resting, my grandma stepped up and took on guardianship of me and my younger brother. She never had a break in her life. She laid out a clear path for me and insisted that I go to college and then onto university. I always knew where I stood and felt safe. She kept me on an incredible trajectory that got me to where I am today.

As an adult, I moved to Liverpool and had my own family. I visited my grandma when I could and, when I did, I started to notice some small changes in her behaviour. She’d call me by my older brother’s name but then recognise me within a few minutes. She would ask about my mum, even though she’d passed away such a long time ago. I noticed the concerned looks between aunties and uncles.

For years, my grandma’s condition seemed stable, apart from the odd memory lapse. Then, in the last two years, everything seemed to nosedive. Her mental and physical health started to decline, and we could see she needed help.

That’s when things became really difficult. We kept taking my grandma to the GP, but it felt like a constant cycle of being told, “She’s old; here are some antibiotics; here’s some pain relief.” We didn’t know where to turn. It took months to get my grandma referred for a memory test, which resulted in her being diagnosed with vascular dementia.

There is stigma around dementia

There’s a stigma attached to dementia in society, and the Caribbean community is no exception. Dementia can be seen as a mental health condition rather than a physical one. My grandma was experiencing a physical illness that was affecting her brain. She stopped going to the church she’d attended for 50 years because people would ask her questions that she couldn’t answer, and it became difficult for her to be in those environments.

My family was determined to keep my grandma at home and look after her themselves. It’s almost a matter of pride in our community, and we don’t ask for help until it’s too late. But looking back, I wonder if we could have done more to advocate for the support my grandmother needed after her diagnosis. I feel sad that my children didn’t get to spend more time with her and I wonder if that might have been possible if she’d had more support in place.

My grandma was a fighter until the end

My grandma ended up being admitted to hospital when she was in the later stages of dementia. She was unable to care for herself, was malnourished, and the doctors were concerned that she might have sepsis. The hospital building was worn down and grimy. It was heartbreaking to see her in that environment. I just kept thinking, “I don’t want my grandma to be here.” But the nurses were incredibly kind and that made a huge difference.

My grandma was a fighter right to the end. When the hospital health professionals thought she was close to the end of her life, she just kept going. That was so like her. She spent her final weeks in a care home, which was a much more comfortable environment than the hospital.

My grandma passed away in January this year, and it still feels raw. But I also feel relieved that she is finally at peace.

I’ve thrown myself into honouring my grandma’s memory. I recently completed the Mount Toubkal trek in Morocco alongside a team of colleagues as part of our charity partnership with Dementia UK. I’ve found fundraising and raising awareness of her experience has been a powerful healing tool. I climbed 4,167m and raised £2,700 for Dementia UK. The team raised £60,000 in total: an amazing achievement.

Every step I took up that mountain was a tribute to my grandma and everything her generation sacrificed. When it got really hard, what kept me going was this notion that throughout her life she had these incredible mountains to climb and overcame them one after the other – no matter what was thrown in her way. Even throughout her struggles with dementia, I could see her determination to keep going, and she never stopped smiling.

Black and African-Caribbean people in the UK are 20% more likely to develop dementia. When you put that alongside the Windrush scandal, it feels like my grandma’s generation has faced barriers at every single stage of their lives. By raising funds and awareness, I’m not just seeking justice for one incident. It’s about recognising the sacrifices my grandma made and ensuring something better comes from it for future generations.

Nothing I do will compare with what my grandma’s generation have had to endure in their lifetime, but I can make sure their story is told, and I can advocate for better, more equitable care going forward. I know my grandma would be proud.

The Black, African and Caribbean Admiral Nurse service gives me hope

When I found out about the new dementia specialist Admiral Nurse clinics service for the Black, African and Caribbean communities, it really touched me. The service provides culturally tailored dementia support for people from these communities, so they can get the help they need and deserve. Although my grandmother died before we could access the service, it gives me hope that the need for a specialist service has been recognised and put into action.

If I could give any advice to families in similar situations, it would be to reach out for support as early as possible. Our culture tells us that we can deal with everything ourselves; it’s part of our story and how the generation before us survived. But there is specialist support available for you and your family. You are not alone on this journey.

The post Tim’s story – “There is stigma around dementia” appeared first on Dementia UK.

Research has shown that there is a link between high cholesterol and an increased risk of developing dementia. On this page, our specialist Admiral Nurses explain what cholesterol is, the link with dementia, and how to lower your cholesterol levels.

What is cholesterol?

Cholesterol is a waxy substance found within the body. It is needed to build cells and produce vitamins, but if your cholesterol levels are too high, it can cause health problems.

The liver produces all the cholesterol your body needs. However, it can also come from:

• meat
• dairy products
• saturated and trans fats, which are found in foods like fatty meat, butter, cheese, fried foods and baked foods such as cakes, pastry and biscuits
• certain oils used in baking, such as palm oil and coconut oil

Types of cholesterol

There are two different types of cholesterol: high-density lipoprotein (HDL) and low-density lipoprotein (LDL), sometimes referred to as non-HDL cholesterol.

LDL/non-HDL cholesterol

LDL/non-HDL cholesterol is often referred to as ‘bad’ cholesterol because it can cause fatty build-ups in the arteries. These thick, hard accumulations of cholesterol narrow the arteries and increase the risk of heart attacks, stroke and other heart problems.

On this page, where we use the term ‘high cholesterol’, we are referring to high levels of ‘bad’ LDL cholesterol.

HDL cholesterol

HDL cholesterol is sometimes referred to as ‘good’ cholesterol, because at healthy levels, it may help protect against heart problems such as heart attacks or strokes.

The role of HDL in the body is to carry LDL away from the heart and back to the liver, where it can be broken down. However, HDL can only carry a small amount of LDL and cannot fully eliminate it from the body.

Normal vs high cholesterol

‘High cholesterol’ means having too much LDL/non-HDL cholesterol in the blood.

Your target cholesterol level will depend on many factors such as your age, risk of cardiovascular disease and any pre-existing health conditions. However, as a guide, a healthy level of LDL/non-HDL cholesterol is below 4mmol/L.

Who is at risk of high cholesterol?

High cholesterol levels are more common in people who eat a diet that is high in fat, smoke, drink too much alcohol, are overweight and/or lack physical activity.

You are also more likely to have high cholesterol if you are over 50, male, a woman who has been through the menopause, or of a South Asian or sub-Saharan African background.

High cholesterol can run in families.

How high cholesterol can affect your brain

High cholesterol can cause a build-up of two proteins – amyloid and tau – within the brain. These proteins create ‘plaques and tangles’ in the brain and are linked to developing Alzheimer’s disease.

High cholesterol can also cause damage to and blockages in the blood vessels which carry blood and oxygen to the brain. When the flow of blood and oxygen to the brain is interrupted, it may lead to vascular dementia.

The impact of high cholesterol on memory and cognition

High cholesterol is linked with an increased risk of dementia, resulting in problems with memory and cognition (thinking). These could include:

• difficulties with memory, particularly short-term memory – including forgetting names, places and dates; losing or misplacing items; and forgetting recent occasions and conversations
• difficulties with problem-solving, judgement and decision-making
• communication problems
• poor concentration and attention span
• changes in mood, behaviour and personality

How high cholesterol can affect your body

As well as leading to a build-up of proteins in the brain, high cholesterol levels can lead to heart problems and stroke as a result of blockages in the blood vessels throughout the body.

The link between cholesterol and dementia

Vascular dementia risk and cholesterol

High cholesterol can cause blockages in the blood vessels. This can affect the blood supply to the brain, increasing the risk of vascular dementia. It can also increase the risk of stroke, and almost one in three people who have a stroke go on to develop dementia.

Alzheimer’s disease risk and cholesterol

High levels of cholesterol in the brain can lead to a build-up of proteins that form plaques and tangles. These are strongly linked to developing Alzheimer’s disease.

Other types of dementia

There is some evidence that high cholesterol is associated with an increased risk of other types of dementia, including Lewy body dementia and frontotemporal dementia. While more research is needed into the link between high cholesterol and rarer forms of dementia, the strong association between high cholesterol and dementia overall means it is important to try to keep your cholesterol at a healthy level.

Cholesterol medication and dementia

Statins are a type of medication used to reduce cholesterol levels. Studies have shown that compared to people with untreated high cholesterol, people who take statins are about 30% less likely to develop Alzheimer’s disease and 7% less likely to develop vascular dementia. Overall, people with high cholesterol who take statins are around 20% less likely to develop any form of dementia than those with untreated high cholesterol.

Find out more about statins and their link to dementia.

Lowering your cholesterol levels to reduce your dementia risk

Research has suggested that reducing your cholesterol levels could decrease the likelihood of developing dementia.

Diet

Making changes to your diet could help to lower your cholesterol and therefore potentially reduce your risk of dementia – particularly cutting down on fatty foods that contain saturated fats. You will be able to see the type of fat and the amount a food contains on nutrition labels, which often use a ‘traffic light’ system where red indicates the food is high in fat, yellow is medium, and green is low.

Foods to avoid include:

• fatty meats like sausages, bacon, ham and meat pies
• cream and hard cheese, such as cheddar
• biscuits and cakes
• butter, lard and ghee
• food that is made with coconut or palm oil

Try to eat more of these foods:

• fruit and vegetables
• nuts and seeds
• oily fish
• wholewheat pasta, wholegrain bread and brown rice
• olive and rapeseed oils

Exercise

You should aim to do around two and a half hours of exercise a week. This can be broken down into small chunks. Any form of physical activity is helpful, as long as it increases your heart rate, for example:

• walking
• jogging
• swimming
• cycling
• fitness or dance classes
• sports like football, netball or tennis

Everyday physical activity also counts, such as housework, gardening, dog walking and washing the car.

How we can support you

To speak to a dementia specialist Admiral Nurse about cholesterol or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org. Alternatively, you can pre-book a phone or video call with an Admiral Nurse.

The post The link between cholesterol and dementia appeared first on Dementia UK.

Caring for a person with dementia 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.

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.

Family carers and our dementia specialist Admiral Nurses share their personal insight into what it’s like to care for someone living with dementia, and their tips for coping.

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: the most common type of dementia in the UK. It typically starts with memory problems
• Vascular dementia: this is usually linked to problems with blood flow to the brain and can cause difficulties with concentration, planning and decision-making
• Frontotemporal dementia: often diagnosed at a younger age, this type initially mainly affects behaviour and language
• Lewy body dementia: this can cause visual hallucinations, movement difficulties and disrupted sleep
• Mixed dementia: a combination of two or more types, most commonly Alzheimer’s disease and vascular dementia

It’s 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.

What are the daily challenges of life with dementia?

Everyone’s journey with dementia is different. While it’s 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.

These are some of the symptoms you might see in a person with dementia.

Difficulties with memory

Memory problems – particularly with short-term memory – 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.

Changes in behaviour and cognition

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 difficulties are common. Many people also experience 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.

“In recent years, Dad has been overcome with confusion once the sun goes down – known as ‘sundowning’. Despite the fact it’s pitch-black outside, he believes that it’s daytime, so it’s very hard to get him to sleep at night. As a result, I’ve had to adjust my own sleeping patterns, often staying awake for most of the night and napping throughout the day.”

 – Kaur, who cares for her dad, Mohinder

Changes in personality

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.

“Carol became aggressive, which was distressing for both me and our children. She would verbally abuse me, and it felt like whatever I did was wrong. But Admiral Nurse Katie really listened to me and reassured me that I wasn’t doing anything wrong, that Carol’s behaviour was just part of the disease.”

 – Russell, who cares for his wife, Carol

Changes in emotions and mood

People with dementia may experience depression, anxiety 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.

“Sometimes I would have to remind Gopala to take a shower, or to brush 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’d previously done with ease.”

 – Pratibha, who cared for her husband, Gopala

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 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.

Hallucinations

In some forms of dementia hallucinations are common, where the person experiences something that is not really happening. They might hear voices, see things that aren’t there or feel physical sensations that are not real, for example feeling bugs crawling on their skin.

Delusions

Some people with dementia experience delusions: false beliefs that feel completely real, for example believing someone is trying to steal from them or thinking their partner is being unfaithful.

Physical changes

Dementia can lead to physical changes. In some forms of dementia, these can occur in the early stages: for example, people with Lewy body dementia may experience slowed movement, difficulty walking, tremors and falls.

As dementia progresses, a person may develop more physical symptoms, such as:

• mobility problems and falls
• frailty
• incontinence
• difficulty swallowing

How carers experience the effects of dementia

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 for the person even while they are still alive. Relationships may also change – for example, the person’s partner may feel more like a carer, and parent-child relationships may reverse.

Guilt 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.

As a person’s 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.

It’s very important to look after yourself if you care for someone with dementia so you don’t reach the point of burnout. Our advice on looking after yourself as a carer has tips to help you take care of yourself.

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 – for example, to try a new hobby together, travel, or spend more time together as a family.

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’t retain those memories themselves. Some carers also feel a sense of pride and fulfilment from being able to care for their loved one.

“I didn’t hesitate to fill the role of Nan’s 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.”

 – Michaela, who cared for her grandmother

Caring for someone with young onset dementia

Caring for a person with young onset dementia (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.

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. Please contact our Helpline if you need to talk to someone.

Carers’ perspectives on dementia

“Caring for a loved one with dementia is an emotional journey filled with moments of love, frustration, and intense guilt. I think it stems from love, because you want to do everything you possibly can. It doesn’t matter how much love, care and support you provide, you will always have feelings of not doing enough.”

 – Ricky, whose gran had Alzheimer’s disease

“Mum will occasionally call me by her brother’s or my dad’s name, but we really get each other. She has good days and not so good days, but it’s impossible to be around her and not feel her passion for life.”

 – Will, whose mum Ronnie has young onset dementia

“While Dawnie’s 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 – her favourite. This meant the world.”

 – Rosie, who cared for her mum, Dawnie

“Living with dementia is hard. Your whole life changes. Relationship dynamics change. I’m Andy’s carer now – but I’m also still his partner. We 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’s part of our life now.”

 – Christine, whose partner Andy has young onset dementia  

How to cope with dementia as a carer

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.

• Be patient and understanding: try to see things from the perspective of the person with dementia. Focus on their feelings and what they can still do, rather than what they can’t
• Provide reassurance: if the person becomes distressed, stay calm, offer comfort and try to identify what’s making them upset – such as unmet needs or changes in routine
• Share the load: ask for help from family, friends or community services. Taking regular breaks is important for your own wellbeing
• Join a support group: talking to others who understand can provide emotional support and practical tips
• Try to respond to the person as they are now, rather than as they used to be
• If the person’s behaviour is challenging, remind yourself that these changes are the result of their dementia and not a reflection of how they feel about you, or anything you have done
• Look after yourself: caring for someone with dementia can be challenging. Make sure you take time for yourself and maintain a healthy lifestyle with a balanced diet and regular physical activity
• Seek professional support if you need it, for example by speaking to an Admiral Nurse on Dementia UK’s Helpline or in a virtual clinic appointment, or by contacting your GP
• Take things at your own pace. You are in a role you never expected and haven’t been trained for, so it’s natural to feel overwhelmed at times. No one expects you to know everything, or do everything perfectly

Practical tips for caring

Try to pre-empt the person’s needs: offer drinks, snacks or help with personal care at regular intervals to prevent distress.

• Communicate clearly: give information in small, easy-to-understand chunks and allow plenty of time for tasks
• Avoid triggers: learn about the person’s life history to identify and avoid things that might upset them
• Create a safe environment: make changes at home to reduce risks, such as removing trip hazards and installing handrails
• Support the person to live as healthily as possible, for example by eating and drinking well, taking medication as prescribed and attending medical appointments (eg health reviews, sight and hearing tests and vaccinations) – taking care of their overall health may make their symptoms more manageable and therefore avoid some of the challenges of caring
• Be aware of changes in the person’s symptoms, behaviour and health and seek medical advice if you are concerned. Changes may be due to treatable issues like pain or an infection, and addressing these could help to avoid situations like hospital admissions

How do I tell people I am caring for someone with dementia?

You might be reluctant to tell people that you are a carer – 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’s important that the people around you understand that you are caring for someone with dementia so they can offer support.

When to tell others

• Choose your own place and time – make sure you feel comfortable before you start a conversation
• Think about who you’ll tell – many people find it helpful to talk to family or close friends first
• Think about what you want to say; making notes could help

How to tell people

• Be honest and open: share how you’re feeling and how your caring role is affecting you
• Let them know if you want practical support or just someone to listen
• Make sure you ask people for the support you need, not what they think you need – caring for someone with dementia affects everyone differently
• Use clear, simple language: explain what dementia is and how it’s affecting the person with the diagnosis and you as a carer
• It might be helpful to point people towards the information on Dementia UK’s website so they can learn more

Recognising when extra support is needed

As dementia progresses, the person’s needs will increase and they will need more support. You can ask your local Social Services for a care needs assessment, which will help identify what support the person needs and any financial support that is available. You are also entitled to a carer’s assessment from Social Services which will look at what support you need in your caring role.

As a carer, accepting that a person needs additional support – whether from home carers or in a care home – can be difficult. It’s natural to feel like you should be able to cope, or that you’re 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.

“Even though I have now found the right care home for Mum, the feelings of guilt don’t 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.”

 – Penny, whose mum lives with dementia

Where to find help

If you are caring for someone with dementia, it’s essential to have support. This could come from:

• other 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 also 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.

Dementia UK support resources

• The emotional impact of a dementia diagnosis
• How dementia can affect relationships and roles
• How we can support you
• Looking after yourself as a carer
• Signs and symptoms of dementia
• Stages of dementia
• Sources of support: practicalities

The post What is it like to care for someone with dementia? appeared first on Dementia UK.

Hannah Gardner, Consultant Admiral Nurse for Children and Young People, and Sophie Dodsworth, Admiral Nurse for Young Onset Dementia, are part of the Dementia UK team advising on the storyline. In this Q&A, they share how their clinical expertise and personal experiences enable them to advise on the storyline so it is told as truthfully and sensitively as possible.

How long have you worked in the field of dementia for?

Hannah: I have worked with people affected by dementia throughout the course of my 22-year nursing career. I’ve been an Admiral Nurse with Dementia UK for almost eight years. I have worked on our Helpline and in virtual clinic appointments and am now the Consultant Admiral Nurse for Children and Young People.

My previous roles have involved supporting people and families affected by rarer types of dementia across the UK and working as a Clinical Lead Admiral Nurse within an NHS hospital. In these positions, I gained vital experience supporting families living with various types of dementia in different circumstances.

Sophie: I’ve supported people with dementia for 15 years across a variety of healthcare settings. Before becoming an Admiral Nurse, I worked in a dementia palliative care service where I supported people living with different types of dementia at the end of their life.

I became an Admiral Nurse in 2023, leading a community Admiral Nurse service, and joined Dementia UK earlier this year as an Admiral Nurse for young onset dementia. I’ve always had a passion for supporting families affected by young onset dementia, where symptoms develop before the age of 65. It’s a privilege to help them through a time that can be incredibly challenging.

How has your role as an Admiral Nurse helped you to advise on the Coronation Street storyline?

Hannah: Our experience of supporting families affected by young onset dementia gives us a unique insight into the challenges they often face. Whether that’s the time it takes to get a diagnosis – on average 4.4 years in younger people compared to 2.2 years for people aged over 65 – or not recognising early symptoms of the condition.

The families we support are always at the front of our mind when we advise on the storyline. We want to ensure the storyline reflects what families go through in order to raise awareness of young onset dementia and debunk the myth that dementia is a condition that only affects older people.

Sophie: As Admiral Nurses, we support the entire family – because if you love someone with dementia, you’re living with it too. In addition to advising on how Debbie’s dementia might affect her, we also consider the impact of her diagnosis on her family and friends and advise on how they may be feeling at different moments in the storyline.

Admiral Nurse for young onset dementia, Sophie Dodsworth, on the set of Coronation Street

Earlier this year we were invited to Coronation Street’s Wellbeing Day for the cast, crew and their families. We know the collaborative effort it takes for storylines like Debbie’s to be played out on screen week in, week out, so it was great to be given the opportunity to share our specialist advice and support with those who work on the show too.

How has your personal experience shaped your work with the Coronation Street team?

Hannah: My mum developed young onset dementia in her early 50s, so I understand the emotional impact a diagnosis has on the whole family and the lack of support available.

Consultant Admiral Nurse Hannah Gardner (right) with her mum (left).

Many people didn’t realise my mum had dementia as her main symptoms weren’t memory related – they were mainly language difficulties – or they didn’t think someone could be diagnosed with dementia at a younger age. I use this personal experience when advising on Debbie’s storyline to try and raise awareness that dementia impacts so many different aspects of life – it isn’t just a memory problem.

Sophie: My husband had a stroke in his 30s which was a huge shock for our family. Debbie has young onset vascular dementia which is caused by damage or disease to the blood vessels in the brain, often as the result of a stroke or transient ischaemic attack(s) (TIAs), also known as ‘mini strokes’.

I’ve been able to use both my clinical knowledge and personal experience of caring for my husband after his stroke when advising the producers and Story Team on how Debbie’s TIAs might affect her. It’s also given me a unique perspective into how illness at a younger age can affect families and the challenges that go alongside this, for example the effect on our household income when my husband wasn’t able to work.

How does the process of advising work?

Hannah: Everyone living with dementia is different – no two people will have the exact same symptoms.

With this in mind, we’ve been looking at Debbie’s character as a whole, including what she was like before she developed dementia, to ensure we can tailor our advice to how we think Debbie’s symptoms might develop in the most realistic way possible.

Sophie: We work collaboratively as part of a team of Admiral Nurses when advising on the storyline. Admiral Nurses all have different backgrounds and areas of specialism, so we bring in different colleagues to share their expertise and make sure Coronation Street’s producers and Story Team receive the best advice possible.

How important is it that soaps like Coronation Street are raising awareness of young onset dementia?

Hannah: It’s vital. Soaps like Coronation Street and EastEnders are giving families affected by young onset dementia a voice. They are raising awareness that dementia doesn’t discriminate – it can affect younger people too.

Sophie: Dementia can still be a taboo subject for some people. Soap storylines like Debbie’s can act as a vehicle to open up conversations about dementia, which we hope will help to breakdown the stigma associated with the condition and encourage people to reach out for support that they so desperately need.

What do you hope Coronation Street viewers will take away from watching Debbie’s dementia storyline?

Hannah: That you’re not labelled by dementia – it doesn’t define you. Everything didn’t change for Debbie the moment she received her diagnosis, and I think that’s an important message to take away. With the right advice and support, people can still have a fulfilling life with dementia.

Sophie: I hope viewers take away that if you’re affected by dementia – whether you’re living with the condition yourself or are caring for someone who is – you don’t need to go through it alone.

Admiral Nurses like me and Hannah are here to provide practical and emotional support to families affected by all types of dementia whenever it’s needed, whether that’s through our free Helpline, virtual or face-to-face clinic appointments or our online sessions, ‘Dementia: what next?’.

If like Debbie, you’re living with young onset dementia, or care for someone who is, there is a section about young onset dementia on our website that contains information about symptoms, getting a diagnosis and how to live with the condition, as well as a database of age-appropriate support across the UK.

The post Coronation Street’s young onset dementia storyline appeared first on Dementia UK.

Statins are a type of medication prescribed to reduce cholesterol and prevent heart disease and related complications, such as heart attacks and strokes.

While some people are concerned that statins could cause dementia, research shows that for people with high cholesterol or heart disease, taking a prescribed statin may prevent damage to the brain and blood vessels and reduce the risk of dementia.

Our dementia specialist Admiral Nurses explain what statins are, what they are used for and how they might help to reduce the risk of dementia.

What is cholesterol?

Cholesterol is a fatty substance that is made by the body and is also in some of the foods we eat. We all need cholesterol to keep our cells healthy, but too much of the wrong type can cause health problems.

There are two types of cholesterol:

• low-density lipoprotein (LDL) or non-high-density lipoprotein (non-HDL): this is often known as ‘bad cholesterol’ as it leads to a build-up of fat in the arteries, which can be dangerous
• high-density lipoprotein (HDL): this is often known as ‘good’ cholesterol as it removes ‘bad’ cholesterol from the body

On this page, when we use the term ‘high cholesterol’, we are referring to ‘bad’ LDL cholesterol.

What are statins?

Statins are a group of medications used to help lower cholesterol levels. They come as tablets to be taken once a day.

How do statins affect the body and brain?

High levels of cholesterol can cause fat to build up in the arteries. This narrows the arteries, which can interrupt the blood supply to the body and brain and lead to health problems like heart disease and strokes. These fatty deposits can also break off and cause clots in the blood vessels. This can happen anywhere in the body, including the brain.

Statins work by blocking a specific enzyme which the liver uses to produce cholesterol, reducing the levels in the body. They can’t remove any existing fatty build-up in the arteries, but they can stop it getting worse.

Why are statins prescribed?

Statins are prescribed to reduce cholesterol levels and help to prevent further damage to the arteries.

What conditions are statins prescribed for?

Statins may be prescribed for people who have high cholesterol or cardiovascular disease (CVD). They may also be prescribed for people who are at risk of developing CVD within the next 10 years. This risk is based on the person’s personal and family history.

CVD includes:

• coronary heart disease: a restriction in blood supply to the heart
• angina: chest pain caused by reduced blood flow to the heart
• heart attacks: when the supply of blood to the heart is suddenly blocked
• stroke: this happens when the supply of blood to the brain becomes blocked
• transient ischaemic episodes (TIAs): ‘mini strokes’

Cholesterol and dementia

Research has shown that people who have high cholesterol between the ages of 40 and 60 are at an increased risk of developing dementia.

High cholesterol can lead to a build-up of proteins in the brain which form ‘plaques’ and ‘tangles’ that are linked to Alzheimer’s disease.

The blockages in arteries caused by high cholesterol levels can also lead to conditions like high blood pressure and stroke, which can increase the risk of vascular dementia.

Do statins increase the risk of developing dementia?

People sometimes worry that taking statins could increase the risk of developing dementia. This could be because a small number of people develop some memory loss and confusion when they start taking statins, which they may attribute to dementia.

However, these symptoms are side effects of the medication and are reversed if the person stops taking statins, unlike the symptoms of dementia, which cannot be reversed and always get worse over time.

Evidence of statins lowering dementia risk

Studies have shown that people who are taking appropriately prescribed statins are around 20% less likely to develop all forms of dementia than those who aren’t taking statins.

However, taking statins where there is no reason to do so has no benefit on memory or thinking skills.

Statins and Alzheimer’s disease risk

Studies have shown statins reduce the risk of Alzheimer’s disease by around 30% in people with high cholesterol, CVD or a high risk of CVD, compared to those who aren’t taking statins.

Statins and vascular dementia risk

People who are taking appropriately prescribed statins are around 7% less likely to develop vascular dementia.

Ongoing research

Research into the impact of statins on dementia is ongoing. There is evidence that if someone is taking statins for high cholesterol, taking them as prescribed on a long-term basis could help. However, taking statins is not thought to reduce the risk of dementia in people who have healthy cholesterol levels.

More research is needed into how statins could affect the chances of developing dementia.

Questions to ask your healthcare provider before starting statins

There are a range of questions you can ask before starting to take statins, including:

• What are the potential side effects?
• What should I do if I experience side effects?
• Could these interact with any existing medications I am taking?
• What other changes should I make while taking them?
• Are there any alternatives to taking statins?
• Lifestyle changes like eating a healthy diet, getting regular exercise, stopping smoking and keeping alcohol consumption within recommended limits can also reduce cholesterol levels

How we can support you

To speak to a dementia specialist Admiral Nurse about statins or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org. Alternatively, you can pre-book a phone or video call with an Admiral Nurse.

The post Understanding statins and dementia appeared first on Dementia UK.