Maria was a very vibrant person, and great fun to be around. She loved people and was very empathic. She had a lot of deep friendships, which helped us a lot later down the line when she developed dementia. We shared a real love of music, and she introduced me to soca and calypso, which both have a rich tradition in Trinidad and Tobago. 

“Maria’s friends were concerned about her” 

Maria’s early signs of dementia were not obvious at first, but with hindsight, I realise that she’d lost a lot of confidence. Retrospectively, the disease explains why Maria began to struggle at work and ultimately stopped working as an IT and Communication Skills Trainer. She also started to get lost in places she was very familiar with. A couple of Maria’s friends then got in touch with me and said they were concerned about her. This helped me feel empowered to have a candid conversation with Maria about what we were facing, and suggest that we go to our GP. Maria was open and agreed to attend the appointment. 

We talked to our GP about Maria’s difficulties with orientation, and he referred us to the Neurology clinic at University College London Hospital (UCLH).  The consultants were cautious about the reasons behind Maria’s memory issues suggesting there could be a range of causes such as menopause or depression , but in 2014 she was diagnosed with young onset Alzheimer’s disease.  She was 56 years old and I was 45. I was deeply upset and shocked. Maria seemed more stoic but was also frustrated that she had been diagnosed with dementia at such a young age when she had so much to look forward to.  

As I was the sole provider, I had to continue to work full-time whilst caring for Maria. As Maria’s dementia progressed, I had a whole raft of around 15 friends who would come over to be with Maria and to take her out. Between them, they almost created a rota system. 

Maria

“Our Admiral Nurse was our advocate”

Maggie, our dementia specialist Admiral Nurse, came into our lives when things started to get difficult. I first heard about Admiral Nurses at our local young onset dementia support group. When Maria moved into middle stage dementia, I felt like we had hit a crisis point and so I reached out to Admiral Nurse, Maggie. Maggie visited us regularly at home and became our advocate with social services helping us to get more home care hours. 

Maria and I both liked sports and started attending sporting memories sessions, where people with dementia and their carers could meet to reminisce and connect over their love of sport. These sessions were great at reflecting the cultural diversity of the group. There were two other older African-Caribbean gentlemen living with dementia, and when the facilitator mentioned West Indies cricket players, you could see their faces light up.  

Maria also attended cognitive stimulation therapy, which was jointly run by our Admiral Nurse and a memory nurse. These were activity based sessions that included discussion, exercise, singing, and sport. The sessions are designed to stimulate cognition, boost mood, and retain day-to-day skills. The sessions were tailored for people with young onset dementia, and also reflected the cultural diversity of the group, including music and news interests. Maria was always in a great mood afterwards and the sessions improved our quality of life.

“It was important to find culturally appropriate care” 

My first thought when Maria was diagnosed was that I didn’t want her to go into a care home. But I had underestimated how brutal dementia is. When Maria entered late-stage dementia, Maggie was instrumental in advising me on finding the right care home. Care is such a critical decision. It was vital that we found care that was culturally appropriate and felt individual rather than generic.  

I was fortunate to find a care home where some of the staff were from a similar cultural heritage to Maria. I felt this was essential for many reasons, like being able to look after Maria’s hair well. Before her diagnosis, she would go to a loctician (a stylist specialising in locs). Maria’s hair was important to her and part of her identity.  It was a huge comfort to know it was being looked after in the care home.  

When I visited the care home, they were often playing Motown, funk and soul music, which reflected Maria’s musical taste and age. We had previously attended other groups where they would play nostalgic songs from the 40s and 50s, which didn’t feel meaningful to Maria. Music brought Maria a lot of pleasure and she loved dancing in the care home. The activities she took part in really enhanced the quality of her life. It made a massive difference to know that there were activities Maria enjoyed, as they really helped to lift her mood.  

The care home also celebrated different cultural traditions and holidays, and cooked Caribbean dishes like plantain, roti and rice and peas. It was important that Maria could eat food that she was familiar with and enjoyed. All of these things helped me feel more at ease, knowing that Maria was getting the care she needed.  

“Supporting Dementia UK is a way of celebrating Maria” 

Maria died in 2023, aged 65, nearly nine years after she was diagnosed. Since then, I have been supporting Dementia UK in her memory.  

This April, I ran the London Landmarks Half Marathon for Dementia UK. I’m an experienced runner and have run the London Marathon before, so this was a little more relaxed! Running up and down Westminster Bridge at the beginning of the course was great fun, and not something you can normally do with thousands of other runners. The route is full of iconic sights and my favourite was The Guildhall, it’s a beautiful building and it was quite oasis like running past there.  Having so many spectators at the event is a real tonic,  and very helpful in that last mile or so along the embankment as you head towards the finish at Trafalgar Square.  

Sometimes when you go to running events, you see a lot of men that look like me, but I’ve recently joined a running community called Run Dem Crew. Part of its mission is to increase diversity in running. It isn’t a conventional running club and it’s great to meet people, hear their stories and share a love of running with a wider group of people.  It was great to see some runners from Run Dem Crew community taking part in London Landmarks Half Marathon. 

When I remember Maria, I think of her generosity, vibrancy and warmth. Supporting Dementia UK is a way of doing something positive and celebrating Maria. 

Listen t0 James’ podcast episode

The post James’ story – “It was important to find culturally appropriate care” appeared first on Dementia UK.

Presented by actor Jim Broadbent, season one explores family dynamics, young onset dementia, the impact of a diagnosis, and grief.

Subscribe to ‘My life with dementia’ on Spotify, Apple Podcasts, or wherever you get your podcasts to listen to new episodes and previous seasons. Alternatively, all our season one episodes are available for you to listen to below.

The post Season one of My life with dementia appeared first on Dementia UK.

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.

To mark Young Carers Action Day, we are sharing a new video conversation between two young people who have experience of caring for a parent living with young onset dementia.  

They talk openly about: 

• how it feels to be a young carer 

• balancing caring with other aspects of their lives 

• the emotional impact of dementia on family life 
• why finding support makes a difference 

Read more about Izzy and Cici’s story.

8 tips for young people caring for someone with dementia 

Hannah Gardner, Consultant Admiral Nurse for Children and Young People at Dementia UK, has shared some tips in response to the most common questions she is asked by young people caring for a parent or family member with dementia. 

1. Take care of yourself as a young carer 

The most important thing is to take care of yourself so that you can manage the challenges of having a family member with dementia. For example, this might mean making sure you have time for an activity or a hobby, and that you’re still able to socialise with friends. 

2. Lean on other people for support 

It’s important to share how you are feeling with people you trust. This might include friends, family members, teachers or support workers such as counsellors at school, college or university. Talking about your experiences can help you feel less alone. 

3. Apply for a young carer’s assessment 

If you care for someone and are aged 17 or younger, you have the right to a young carer’s assessment from your local council. This can help work out what support you need and how to get it. 

A young carer’s assessment looks at: 

• the impact caring has on your education and wellbeing 

• what support you may need 

• services that could help you and your family 

You can find out more about young carers’ rights on the NHS website. 

4. Be aware of how social media makes you feel 

Think about who you follow and focus on accounts or content that make you feel positive and supported. If something consistently makes you feel worse, it’s okay to mute or unfollow it. 

5. Explore what you can still do with the person you care for 

Help the person you’re caring for be as independent as possible and encourage them to do things on their own when they can. As well as helping them keep their sense of independence and self-esteem, it will make the time you spend together more enjoyable. 

Think about activities you can do together, such as: 

• listening to music 

• looking through old photos 

• going for a short walk  

• sitting outside in the garden 

Spending time together in ways that are not just about caring can strengthen your relationship. 

6. Think about how you’re communicating 

When you’re talking to the person with dementia: 

• use short, clear sentences 

• speak calmly and slowly 

• make eye contact 

• keep your body language open and relaxed 

• sit at their level rather than standing over them 

Small changes in communication can reduce frustration for both of you. 

7. Know when you need to ask for help or step away 

Caring for a person living with dementia needs patience and calmness. Dementia can make it difficult for someone to understand and communicate, which may lead to changes in their behaviour such as becoming restless, frustrated or upset. 

If you feel overwhelmed, unsafe, or unsure what to do: 

• step away if needed 

• speak to a trusted adult 

• ask for professional support 

 Your safety and mental health matter just as much as the person you care for. 

8. Get support from Dementia UK 

If you are a young person supporting someone with dementia, specialist advice can make a real difference. 

Our Consultant Admiral Nurse service for Children and Young People is open to children and young people under the age of 18 who are living in families affected by dementia. 

We offer 60-minute support sessions by phone or video call for advice and guidance with any aspect of dementia.   

If you would like to speak to someone, you will need to ask a parent or guardian to contact us on your behalf by calling our Helpline on 0800 888 6678 or emailing helpline@dementiauk.org 

What is young onset dementia?

It is estimated that over 70,000 people in the UK are living with young onset dementia.  

‘Young onset’ dementia is where dementia symptoms develops before the age of 65. It affects people most often between ages 45 and 65, although it can occur at a younger age. Find out more about young onset dementia.  

Young Carers Action Day 

Young Carers Action Day is a reminder that caring responsibilities can affect people of all ages. If you are a young person caring for someone living with dementia, you are not alone – and we’re here to help. 

The post 8 tips for young carers supporting a parent with dementia appeared first on Dementia UK.

This includes supporting families facing specific complex challenges relating to dementia, and providing specialist services for communities that struggle to access support, such as the Black, African and Caribbean communities Admiral Nurse clinic and the Chinese communities Admiral Nurse clinic (coming soon).

Together, we support families affected by dementia, provide national leadership for health and social care systems and professionals and help shape better dementia care across the UK.

What are Consultant Admiral Nurses?

Consultant Admiral Nurses are senior specialist dementia nurses at Dementia UK. They support families experiencing complex needs and lead improvements across health and social care systems.

Their advanced clinical expertise and leadership help improve standards, strengthen dementia pathways, support other Admiral Nurse to develop their skills and reduce health inequalities.

Their role helps ensure dementia services are high-quality and responsive to the needs of families affected by dementia.

How we support families and professionals

Consultant Admiral Nurses offer specialist advice, emotional support and expert guidance to families experiencing specific challenges relating to dementia. We help people understand the condition, develop coping strategies, and navigate health and social care services. We also provide education, training and advocacy to improve access to fair and equitable support for all communities, including those most affected by health inequalities.

Each Consultant Admiral Nurse has their own area of specialism:

• Lewy body dementia
• young onset dementia
• children and young people
• frailty and physical health
• sport and dementia

Tackling health inequalities in dementia

Dementia UK is committed to making sure no one faces dementia alone, but we know that some people and communities experience health inequalities that can limit access to the right support. This is why our Health Inequalities Team exists.

We are expanding our work with underserved communities by developing dedicated clinics, building strong partnerships and embedding inclusive practice across Admiral Nursing.

By working alongside communities and growing our specialist services, we aim to improve access, experiences and outcomes for families affected by dementia.

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Lewy body dementia is an overarching term for a set of complex and challenging conditions that can be mistaken for Alzheimer’s disease due to the overlap in symptoms. This means it may be misdiagnosed. However, getting an accurate diagnosis as early as possible will enable the right support to be put in place to help manage its progression and maintain the person’s quality of life.

Our dementia specialist Admiral Nurses explain what Lewy body dementia is, its subtypes and how to manage the condition.

What is a Lewy body?

Lewy bodies are abnormal clumps of protein that develop in nerve cells in the brain. The reasons for this are not yet fully understood, although research is ongoing.

How Lewy bodies affect the brain

Lewy bodies affect the normal functioning of brain cells. They can build up in any part of the brain but are most common in the areas responsible for thought, movement, visual perception, sleep and alertness.

The connection between dementia and Lewy bodies

Lewy body dementia is an umbrella term for two different types of dementia: dementia with Lewy bodies and Parkinson’s dementia. The main difference between the two types of Lewy body dementia is when specific symptoms first occur. In dementia with Lewy bodies, usually cognitive changes will happen first, while in Parkinson’s dementia, usually physical changes will happen first.

Parkinson’s dementia

Lewy bodies are present in people who have Parkinson’s, usually in the areas of the brain responsible for movement. Not everyone with Parkinson’s will develop dementia, but about one third will, with the risk increasing the longer people live with the condition.

Dementia with Lewy bodies

Dementia with Lewy bodies is caused by a build-up of Lewy bodies in the areas of the brain that control alertness, visual perception and thinking. This interrupts the connections between brain cells and can eventually stop them from working. It also reduces the chemicals that are needed in the brain to function properly.

Lewy body dementia and Alzheimer’s disease

In the early stages, Lewy body dementia is often mistaken for Alzheimer’s disease, as some of the symptoms are similar – for example, problems with thinking and perception. However, it differs from Alzheimer’s disease in that it can particularly affect the person’s movement (Parkinsonism), and can cause hallucinations, delusions, and changes in alertness.

Signs and symptoms of dementia with Lewy bodies

The symptoms of dementia with Lewy bodies are complex and may differ depending on whether a person has dementia with Lewy bodies or Parkinson’s dementia. Not everyone will experience all the symptoms or develop them at the same time.

Early signs

In dementia with Lewy bodies, cognitive changes usually happen first. These can include:

• changes in thinking
• difficulties with visual perception (eg spatial awareness, misinterpreting visual information)
• memory loss (although this is often not the first symptom)
• increasing difficulty with managing everyday tasks
• problems with staying alert

These symptoms tend to occur at least one year before, or at the same time as, the person develops problems with movement.

In Parkinson’s dementia, physical changes happen first. These include difficulties with movement (Parkinsonism) such as tremors, rigidity or slowness. Other problems may include sleep disturbance, dizziness and poor balance, changes in bowel or bladder function, difficulty regulating body temperature and a loss of sense of smell. These symptoms usually develop one year or more before cognitive changes become apparent.

Cognitive symptoms

A person with dementia with Lewy bodies may experience changes in their mental function, including:

• difficulty with organising, planning and carrying out everyday tasks, such as handling money, using a phone or computer and using household appliances
• difficulty with remembering events or names of familiar people (this may be more pronounced in later stages)
• recurring visual hallucinations – seeing things that are not there, usually people or animals. These may be pleasant or upsetting
• delusional ideas which may be linked to visual hallucinations – for example, a feeling of being watched or misidentifying familiar people (Capgras syndrome)
• disturbed sleep – known as rapid eye movement (REM) sleep disorder, in which people are restless and can experience intense dreams or nightmares

Memory problems are often less common in the early stages than in some other forms of dementia.

Behavioural symptoms

Dementia with Lewy bodies may cause changes in behaviour such as sudden changes and fluctuations in alertness – people may stare blankly into space for periods of time, seem drowsy and lethargic and spend a lot of time sleeping. As the condition progresses, some people experience periods of unresponsiveness.

Physical symptoms

Physical symptoms tend to be more pronounced in Parkinson’s dementia than Lewy body dementia, particularly in the early stages. They include movement problems such as:

• slowed movement, difficulty walking, shuffling, appearing rigid, ‘freezing’ (as in Parkinson’s)
• tremors – usually in the hands, particularly during movement
• problems with balance and being prone to falls

Other physical symptoms can include (although will not be experienced by everyone):

• low blood pressure on standing up – known as orthostatic or postural hypotension
• bladder sensitivity – particularly at night
• constipation
• swallowing problems
• impaired sense of smell
• increased salivation or drooling
• excessive sweating
• softer speech and/or problems saying specific words

Psychological symptoms

Psychological symptoms often occur in dementia with Lewy bodies and may include:

• delusions: a fixed belief about something that is not true. These often have a ‘theme’ in Lewy body dementia – for example, some people experience Capgras syndrome, where they believe that a family member or friend has been replaced by an imposter. Other common themes are feeling as though someone is watching them or ‘out to get them’. These can be linked to hallucinations – for instance, they may believe they can see people in their home
• depression: persistent low mood and feelings of hopelessness which can result in poor sleep and appetite and loss of interest in previous activities
• apathy: where someone appears to be indifferent or lacks initiative. This can occur independently of depression
• anxiety: intense feelings of fear or unease which can result in symptoms including a racing heart, sweating and panic attacks

How common is Lewy body dementia?

Dementia with Lewy bodies accounts for 10-15% of diagnoses of dementia, although some studies suggest it may be up to 20%. Around 10% of people with young onset dementia (where symptoms develop before the age of 65) have Lewy body dementia.

Diagnosis of Lewy body dementia

Getting an accurate diagnosis of Lewy body dementia is important to ensure the person receives the right treatment and support. This process begins with seeing the GP. If they believe the person is showing signs of Lewy body dementia, they should refer them to a memory clinic or dementia service and/or a movement disorder/Parkinson’s service. This may depend on which symptoms appear first.

The diagnostic process includes taking a family and medical history, asking the person (and a family member or other person close to them, if possible) about their symptoms, and assessing their physical health. The person carrying out the assessment should ask about:

• difficulties with memory
• their ability to carry out their usual activities
• changes in behaviour and mood
• changes in alertness
• whether they are seeing/hearing things
• their sleep patterns

Basic cognitive tests may be carried out to check the person’s visual/spatial abilities and memory, alongside an assessment of motor (physical) function, eg tremors, problems with gait (how the person walks) and rigidity.

If the diagnosis is not clear following specialist assessment, a specific scan may be required to measure levels of the chemical dopamine, which are usually low in people with Lewy body dementia. This is called a SPECT scan or DaTSCAN. It involves having an injection of a special radioactive substance, usually into a vein in the arm, which helps show how much dopamine is being transported in the brain. The dose of radiation is very small and is quickly eliminated from the body.

Investigations for other symptoms of Lewy body dementia may include:

• myocardial perfusion scintigraphy: used to measure blood flow to the heart and to detect orthostatic hypotension. This involves an injection of a radioactive substance, followed by monitoring the person’s heart using electrodes (sticky pads) stuck to the chest, and a scan of their heart
• polysomnography: a study of someone’s sleep that monitors brain waves and other functions to help diagnose sleep disorders, including REM sleep disorder. This involves the person having electrodes stuck to their head, chest, legs and fingertips; a video camera will also monitor their activity whilst they sleep. It is usually done at a specialist sleep clinic

Challenges of diagnosing Lewy body dementia

Lewy body dementia can be difficult to diagnose in the early stages because its symptoms often overlap with Alzheimer’s disease or psychosis (a psychological condition where the person sees, hears or believes things that are not real). Many cases are initially misdiagnosed or overlooked because of this, but as more symptoms develop, such as visual hallucinations, movement problems or sleep disturbances, doctors can usually identify Lewy body dementia more accurately.

If you think the person has been misdiagnosed or their condition has changed, ask the GP to make a referral for further assessment. This may be with a neurologist for motor symptoms or a dementia specialist for cognitive or psychological symptoms.

Treatment for Lewy body dementia

People with Lewy body dementia may be offered medication, alongside other treatments, to help with their symptoms. These will not stop or reverse the progression of the condition but may improve quality of life for them and their families and carers.

Medications

Some of the medications used to treat Alzheimer’s disease may help with the cognitive symptoms of Lewy body dementia, for example, by reducing distressing hallucinations and improving concentration and memory problems. These are usually most effective in the early to middle stages, but do not help everyone.

It is important to know that many people with Lewy body dementia are particularly sensitive to medications known as antipsychotics, which are sometimes used to treat hallucinations. Only certain types, known as atypical antipsychotics, should be used, and even then, with extreme caution.

Medications used for Parkinson’s may be helpful, but again, caution is required as certain medications or higher doses may make hallucinations worse.

If you have any concerns about the introduction of a new medication or change in treatment or notice any side effects, discuss this with the person’s GP or specialist as soon as possible.

Other treatments focus on symptom control and are detailed below.

Physiotherapy

Physiotherapy can help with managing some of the symptoms of Lewy body dementia. Exercises to strengthen the leg muscles can improve posture and coordination and teach the person safer movement strategies. Stretching and gentle aerobic exercise can also help reduce pain from muscle stiffness.

Music and art therapy

Music and art therapy can help to improve mood, reduce agitation and enhance communication. Music in particular is known to stimulate memory while songs with a steady beat can improve gait and reduce freezing episodes. Read more about music and dementia.

Cognitive training

Activities designed to exercise and improve specific cognitive functions like memory and problem-solving can help slow the decline in a person’s cognitive abilities. This is sometimes referred to as cognitive stimulation therapy. These activities include puzzles, memory games and computer-based programs. Word games and sorting tasks can also help reduce apathy and provide a sense of accomplishment.

Progression of dementia with Lewy bodies

It is hard to predict how quickly Lewy body dementia will progress, and each person will have their own experience, so it is better to focus on maintaining quality of life and enjoying time together than on how quickly they will deteriorate. However, it is generally considered to progress in three stages.

Early stage

In the early stages of Lewy body dementia, people can often manage simple tasks but may struggle with complex activities such as finances and driving. They may experience disturbances in their perception and can misinterpret things, sometimes leading to visual hallucinations, but often retain insight into what is happening. Fluctuations in awareness or thinking are common, and people may appear to have lost focus or concentration. Up to 90% of people with Lewy body dementia are found to have experienced sleep disturbances before their diagnosis.

Middle stage

In the middle stages of Lewy body dementia, the person will usually need more assistance with things such as dressing, bathing and preparing meals. They may have difficulty recognising familiar places or people and may need supervision because of the risk of falls and hallucinations. The person may struggle with communication and experience increasing anxiety, low mood and fluctuations in awareness or concentration.

Late stage

In the later stages of Lewy body dementia, a person experiences an increasing decline in cognitive and physical abilities. They are likely to have difficulty with verbal communication and may become unable to recognise their surroundings or loved ones. The person may eventually be unable to leave their bed and require full-time care. They may still experience hallucinations, even if they cannot express that this is happening. They may also experience difficulties swallowing and be susceptible to infections.

Prognosis

The progression of Lewy body dementia can vary significantly from person to person. Over time, most people will need support at home, and some may eventually need to move into a nursing home.

Living with Lewy body dementia

With support, a person with Lewy body dementia can maintain their quality of life for as long as possible. Strategies that may help include:

• ensuring the person eats well
• making sure they drink enough fluids
• making adaptations to their home so it is safe and comfortable: for example, you can reduce the incidence of misperception by removing patterned carpets/curtains etc
• exploring new ways to communicate if verbal communication becomes difficult
• using living aids and assistive technology to make everyday activities easier
• ensuring the person takes any medication correctly
• applying for a needs assessment to assess what support they need
• applying for all the financial benefits that they are entitled to
• learning strategies for managing hallucinations and delusions
• supporting them to be physically active in a way that is safe for them

Activities for people with Lewy body dementia

Meaningful activities can help a person with Lewy body dementia maintain their independence, quality of life, self-esteem and social connections. You can encourage them to continue with their usual routines and activities, such as work, everyday tasks (with support if necessary), spending time with family and friends, hobbies and travel.

The person may also like to try new activities to maintain their motor and cognitive function, for example joining a community group such as a choir or book club, learning a skill like a language or craft, trying a new sport or physical activity that suits their level of ability, or joining support groups for people in similar situations.

Bear in mind that everyone with dementia will have their own strengths and abilities, and their usual activities will need to adapt as their condition progresses. However, with support, the person can live as well as possible with Lewy body dementia, for as long as possible.

Support for people with Lewy body dementia

For more information visit lewybody.org. You can also phone our free Dementia Helpline to speak to a dementia specialist Admiral Nurse about Lewy body dementia on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email helpline@dementiauk.org or you can pre-book an appointment by phone or video call with an Admiral Nurse.

The post Dementia with Lewy bodies 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.

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.

Ian was diagnosed with depression

Ian took early retirement in 2018 when he was 58. He had been with the Ministry of Defence for 40 years, but he didn’t like the way his job was changing. The plan was to have six months off then try to find something with less pressure. Then Covid hit and everyone went into lockdown.   

At the start of 2022, I noticed Ian was slowing down and seemed out of sorts. He was walking much more slowly and becoming overly anxious about things. He was also becoming weaker and losing weight, even though his eating habits and exercise routines hadn’t changed. He struggled to play bowls – something that he had always loved to do – and as a result he was asked to stop playing competitively. Having that taken away had such an effect on him, and he became very withdrawn. 

I requested a GP appointment for Ian in June 2022. We were offered a telephone consultation and Ian was diagnosed with depression. The GP prescribed antidepressants but they made no difference. We arranged several follow-up appointments, but each time, the doctor assured us that it was depression.  

In March 2023, after no improvement, I requested a second opinion, and at that appointment Ian was given a suggested diagnosis of Parkinson’s. 

A follow-up appointment confirmed young onset dementia

The GP requested an immediate referral to a consultant and an urgent MRI scan. We were told there was an eight-week wait, but we heard nothing. When after three months I chased it up, I was told Ian’s referral had been downgraded to non-urgent, and the MRI request cancelled.  

Our GP re-requested the MRI and suggested we see a consultant neurologist privately so that if Ian did have Parkinson’s, he could start treatment without delay. The consultant neurologist confirmed that Ian did have significant signs and symptoms of Parkinson’s, with a reduction in mobility and motor coordination, and immediately prescribed Parkinson’s medication. 

When we finally had our NHS appointment in September 2023, the Parkinson’s consultant increased Ian’s medication, identified cognitive concerns and requested a range of tests. By that point, Ian was unable to cut up food, do up zips or buttons or operate household devices like the TV or cooker. He had lost over three stone in weight that year. 

A follow-up appointment with the Parkinson’s consultant in February 2024 confirmed rapidly progressive Parkinsonism and young onset dementia. Ian was 64 at the time.  

Ian’s decline was so rapid

The delay in the diagnosis, the lack of information, the cancelled appointments and scans had all made this an incredibly stressful period for the family. Our children, who were in their 20s, both struggled with feelings of guilt because they were living away from home at such a difficult time. If I got upset with the enormity of what we were facing, Ian would get really distressed because he felt he was responsible. It was an impossible situation to deal with. 

Ian began to struggle to follow conversations and became reluctant to engage with anyone outside the family. He initially didn’t want anyone to know about his diagnosis, so we became very isolated from friends and the wider family. We had no support, and no idea how to manage day to day.   

Ian’s decline was so rapid. He was diagnosed in February 2024, and by that April, he was confused about who I was. He thought his wife had left him, and I’d been brought in as carer. He lost all his confidence and wouldn’t leave the house on his own, even to walk the dog.  

I was trying to keep my job going during this time; fortunately, my employer, Aviva, has been incredibly supportive and allowed me to work from home, so Ian was never left alone. I also arranged a ‘sitting service’ for a few days a week, where people would come in and take Ian out for a walk or a coffee to break up his day while I worked.  

I felt totally out of control

As the year progressed, Ian became very disorientated – not recognising our family home and becoming so confused. He became uncomfortable sharing a room with me as he thought our children would think badly of him, so I often moved to the spare room to avoid distressing him further.  

I was referred to our dementia specialist Admiral Nurse Rachel last June. At the beginning, I was an emotional mess on the phone. It felt like I was trying to climb a massive mountain, and that everything was slipping away from me. I felt totally out of control, but Rachel’s practical and specialist advice has been invaluable. She is also a brilliant emotional support and always there for me when I need her. 

Rachel helped me to focus on one hurdle at a time. I wasn’t sleeping properly when Ian and I were still sharing a room. She reminded me that I needed to be well rested to be able to care for Ian the following day and suggested that I permanently moved bedrooms. I did, and this really helped me to feel stronger and more able to care for Ian.  

My Admiral Nurse helped me to cope with the guilt

By October, I finally accepted that Ian needed far more support than I could give. I arranged for carers to come in to help in the mornings, but this really didn’t work for us. Ian felt hurried and confused by the carer turning up seemingly out of the blue, and he became very distressed. I had no idea what to do to help him.  

I was on the edge of falling apart completely. I couldn’t keep going. 

I agreed to take Ian for an assessment at a local care home for respite care. It was absolutely heartbreaking. I felt that I had failed him and let him down by not being strong enough to care for him at home. But I also knew it was the best thing for him and that he would get the care he needed and deserved. Rachel was there every step of the way, reminding me that I had done my absolute best for Ian.  

When Ian moved to the care home permanently, Rachel gave us some tips that I would never have thought of. We have a dog at home, so she suggested that I buy a similar-looking toy dog that Ian could take with him to make him feel more comfortable. She also suggested that we put a photo album in his room with a collection of photos from throughout his life. She said this would be a great way for the carers to get to know Ian and to initiate conversations with him. 

As soon as Ian moved into care, he remembered who I was again! He became far less stressed and settled very quickly. I was able to take a step back, knowing that he was getting the professional support he deserved. I was finally able to start putting myself back together again. 

Rachel has been a massive support

Within six months, as Ian’s dementia progressed, I was advised to move him into a nursing home as they would be better able to meet his needs than his original care home. The speed of this came as shock to me, but Rachel was there to explain why this was necessary for Ian and gave me the reassurance I needed. Ian’s nursing home is a wonderful place and will be his ‘forever home’. It organises events and days out that I can go on too, which means we spend real quality time together.  

Rachel has been such a support, both practically and emotionally. She has a very calm and practical approach which is absolutely what I need. I feel like we’ve been through quite a journey together, and I know she will be there whenever I need her. 

The post Katrina’s story “My Admiral Nurse helped me to cope with the guilt” 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.

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