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Young Onset Dementia

Dementia affects 850,000 people in the UK and around 42,325 young people have been diagnosed with this disease. Those who show symptoms of dementia before the age of 65 are classified as having early-onset dementia. However, symptoms can start to show from as young as 30 years old. Both young-onset dementia and dementia are caused by a buildup of proteins in the brain, that results in a lack of a connection between nerve cells, and a severe loss of brain tissue. These plaques limit the production of chemicals in the brain, which inhibit important messages being transmitted. However, there are a wider range of diseases that trigger early-onset dementia in a younger person and they have a higher probability of having a rarer form of the disease.


Familial Alzheimer's Disease

It is thought that between 7-12% of people with young-onset dementia was inherited from a parent. The inherited form is known as Familial Alzheimer's and is incredibly rare; symptoms usually appear in someone in their 30s to 50s. The earlier the start of the disease, the more likely it is to be genetic. Familial Alzheimer's disease is caused by a mutation of PSEN1 gene (presenilin 1) that boosts the production of amino acids. Instead they produce excess proteins that build up in the brain. However, this form of dementia is incredibly rare - according to the Alzheimer's Society it affects over 500 families worldwide and accounts for 1% of dementia.


Types of Young-Onset Dementia

Young-Onset Vascular Dementia

Vascular dementia accounts for 15% of those with young-onset dementia, and is the second most common type in people under the age of 65. Vascular dementia is caused when there are issues with the supply of blood to the brain, and has links to diabetes and heart disease. This type of dementia requires complex care. A genetic and rare form of this disease is known as CADASIL (Cerebral Autosomal Dominant Arteriopathy), and is prevalent in those aged 30-50. It is caused by a mutation in the NOTCH3 gene, which produces an excess proteins that build up in the brain. Patient state that there are 400 families worldwide who are affected.

Early-Onset Frontotemporal Dementia

Frontotemporal dementia affects 10-15% of young people with the disease, and is caused by damage to the lobes at the front and/or sides of the brain. This form of the disease affects more younger people than old. The most common age of diagnosis is 45-65.

Young-Onset Dementia with Lewy Bodies

5% of people under the age of 65 with dementia have this type of the disease. It is caused by the build-up of tiny protein deposits known as Lewy bodies in the brain. These deposits are linked to Parkinson's disease; one third of people with Parkinson's develop dementia.

Korsakoff's Syndrome

Korsakoff's Syndrome is a form of dementia associated with alcohol abuse. It affects 10% of young people with dementia, and is caused by a lack of vitamin B1 (thiamine). This type of dementia has been known to be halted and reversed.

Rarer Forms of Early-Onset Dementia

20-25% of young people with dementia have a rarer form of this disease. These causes are down to degenerative neurological conditions that cause progressive damage to the nervous system (such as Huntington's disease, corticobasal degeneration and CJD). Some rarer types of dementia progress very rapidly over just a few months.


Caring for Someone with Young-Onset Dementia

Due to the age at which early-onset Alzheimer's starts, it can have a devastating impact on the patient's life. Some people may be working, as well as have a magnitude of responsibilities such as a mortgage and family to take care of at the time of diagnosis. Your parents or children may want to shoulder some responsibility of caring for you, but you shouldn’t ever feel like you are a burden to them. Home care is most effective when the right support is used.

It is important to access the support and services that are out there for you, as well as finding treatment that will work for you. There are dedicated age groups out there for younger people with Alzheimer’s and dementia - it is important to remember that you are not alone. 

You may feel that you do not require any home care services or domiciliary care at the early stage of your diagnosis, but as dementia is a progressive disease it is important to discuss the future live-in care or complex care you may need. Should you have any questions about living with dementia, or any care services do not hesitate to get in touch with Sova Healthcare.
Palliative Care

Finding out that your loved one is facing palliative care is a very difficult concept to digest, even if you’ve watched them battle Alzheimer’s or Dementia for a very long time. Depending on the person’s age and type of Dementia, a patient can live for up to a decade after a diagnosis has been made. But that does not make it any easier when it comes to accepting that your loved one is facing end of life care. Even though you are fully aware that your family member’s Alzheimer’s or Dementia is progressing, you may find it hard to even believe what you’re hearing, and that’s perfectly normal. 

The end of life sector provides palliative care for over 200,000 people with terminal and debilitating illnesses in the UK. Watching a family member go into palliative care will be one of the toughest things you’ll ever do, but it is important to remember you’re not alone. Palliative Care intends to;
  • Improve their quality of life.
  • Relieve pain and any other distressing symptoms.
  • Support life and look at dying as a normal process.
  • It does not speed up or postpone death.
  • Combine psychological and spiritual aspects of care to create a calmer atmosphere.
  • Offer a support system so that people are able to live as actively as possible until death.
  • Offer a support system to help the family cope during end of life care and during bereavement.
  • Utilise a team approach to address the needs of the person in need of care, alongside their families.

Here are 5 tips to help you cope if your family member is facing palliative care.

Remember that this is what's best for your loved one.

It is important to remember that when your loved one is recieving end of life care, it is the best possible thing for them. Palliative care is designed for those who are no longer going to get better, and those with a complex illness. 

Whether they are having palliative care from home or hospital, the main aim of this type of care is to improve their quality of life and relieve them from any pain and any other distressing symptoms they may experience. According to a Marie Curie study, 63% of the UK’s population wish to die in the comfort of their home, and if your family member is amongst this figure and receiving end-of-life care at home - remind yourself that you’re doing what is best for them. Alongside this, if they are in a hospital or care home then remind yourself that they are in a safe place and being well looked after.

Join a support group.

Dementia affects around 850,000 people in the UK alone, and this number is expected to rise to 1,142,677 by 2025 - so do not worry, you are not alone. Hundreds of people across the UK will understand exactly what you’re going through. The hospice sector provides end-of-life care and bereavement support for 40,000 families a year. Sometimes being surrounded by people who can empathise with what you’re going through will help, as well as talking about your own experiences. 

Alternately, if you have any questions, queries or just need to talk to someone then use the palliative care team attending to your family member. They are there to help you through it after all.

Understand that you may not be the best person to provide care.

Providing domiciliary care for a loved one is incredibly hard, and due to the difficulties that come with palliative care, you may need to accept that a professional needs to take over. End-of-life care is a complex care that involves making decisions that you couldn’t ever imagine making for your loved ones, and whilst you may be able to provide day-to-day general care, they wild need specialist care when it comes to medication and other needs. 

Put your own health first.

According to Get Palliative Care, 60% of 44 million caregivers work a full-time job and spend roughly 18 hours a week caring for an ill family member. Sometimes you may feel resentful and overwhelmed (which is often followed by guilt) that you’re in this position, but asking for help doesn’t make you weak. Putting your own health first when a family member is getting palliative care simply means you are being sensible and looking at the bigger picture. How will you be able to continue supporting your loved one if you burn yourself out? Due to the way Alzheimer’s and Dementia attacks the brain, your loved one’s immune system will be very weak, and it important to make sure that you stay healthy so that you do not pass anything on to them that they cannot fight off. So, know when to ask for help and take a short break.

Make sure the required paperwork is filled out.

As soon as you find out your loved one needs palliative care, it is important to talk about their wants and needs when it comes to their end-of-life care, and fill out the necessary paperwork. Families making medical decisions on behalf of a loved one is devastating, but making sure their wishes are made clear beforehand will help you come to a certain decision. Asking your family member to make an advanced decision whilst they have the mental capacity to do so means that you can respect their wishes later on in their care. You can find out more about advanced medical decisions here.

If you would like advice or help regarding palliative care for a loved one then do not hesitate to get in touch.
Older people holding hands

Taking care of a loved one with Alzheimer's disease or dementia can severely test the vows you made to one another many moons ago. It is a very difficult and strenuous job that inevitably causes pain and grief for the person you once knew - before dementia came crashing into your lives.

However, whilst loving and caring for someone with dementia can be hard, you will find that it can be incredibly rewarding if you remember a few important things. So, in the spirit of Valentine's Day (14th February), here is what you should consider when your partner has dementia:

Dementia does not define who they are.


Being diagnosed with Alzheimer's disease or another form of dementia is devastating and life-changing both for the patient and for their loved ones, but it is crucial to remember that dementia does not become that person. You knew who they were before their diagnosis, and it is important to hold on to those memories of who they really are.

Dementia is responsible for their mood swings and personality changes.


Dementia is a physical disease that causes a build-up of proteins in the brain. These proteins then form plaques that kill nerve cells and block signals / connections in the brain. This causes significant loss and damage of brain tissue, alongside the production of chemicals because important messages are no longer being delivered.

All of this is responsible for the mood swings and personality changes you see in your partner - it is imperative to remember that it is the disease that is progressing and causing this.

Learn as much as you can about dementia.


Educating yourself about dementia as much as you possibly can means that you will be able to better understand what is happening to your loved one and why. This means that you can rationalise the situation and empathise with your partner, as well as preparing for the future.

Love your partner for who they are now.


Watching the person you've spent your life with change before your very eyes is a devastating experience, but it is essential that you learn to love your partner with dementia (even as you hold on to the memories of what they were like before). Once you have grieved for the loss of the person you loved - and learned to love them anew - accepting the fact that you may not be able to 'reach' the person they once were becomes easier. Former Alzheimer's caregiver Ellen Woodward Potts states, "The key to coming to terms with this loss is to realise that the human being you have known and loved is still there, but their persona has been masked by Alzheimer's."

Expect the unexpected.


It is important to be realistic in your expectations for yourself and your loved one. Make sure the goals you set are realistic, and don't get wound up if they are not met. For example, if an activity your partner used to love now causes a negative response then accept this and try something different. Remember, it is the progression of the disease that is causing their behaviour.

Learn to let things go.


Learning to let things go when your partner suffers from dementia is one of the most challenging and frustrating aspects of the disease, but it is a crucial one. Their mood swings, personality changes and memory loss will be caused by the progression of plaque build-up in their brain, so make sure you are not arguing with them over a forgotten memory or the way they are behaving as it will only upset the pair of you. Be willing to take the high ground and let it go.

Listen to your own limitations.


Those with dementia and Alzheimer's disease may require a range of home care, from specialist domiciliary care to palliative care. This is a huge responsibility for professional caregivers, let alone family members who also act as caregivers. Due to the complex needs and characteristics of dementia, the disease costs the UK over £26 billion per year, and there are currently over 670,000 carers in the UK. There is nothing wrong with asking for help or additional support when you feel overwhelmed.

Make sure you rely on friends and family members if necessary. You're doing everything imaginable - and more - to be there for your partner, and it's important to remember that your support network will be there for you too. Understand your own emotional and physical limitations; it takes a strong person to do all of this alone, but it takes an even stronger person to ask for help when they need it.

Explore methods of communication.


Communication is something that the majority of dementia patients struggle with to one degree or another, but poetry, dance, music, arts and crafts are all good ways to connect with your partner. These methods are especially helpful when your loved one is no longer able to verbally communicate. Remember, a gentle touch on the arm and a kind approach will also show them just how loved they still are.

Dementia affects around 850,000 people in the UK alone, and this number is expected to rise to 1,142,677 by 2025. Alzheimer's disease is the most common form of dementia, but no two people living with dementia are the same. If you would like advice on how to care for a family member with dementia, please do not hesitate to get in touch.
Flu Virus

2015 saw the highest increase of deaths in a single year since 2003. There were 529,613 registered fatalities, and 28,189 of those were due to influenza (also known as the flu). 24,201 flu deaths occurred in patients aged 75 and over. The flu is a highly contagious virus, passed through airborne particles and droplets, which then affects the respiratory system. Flu season runs from October to March, and what makes the virus so dangerous is the fact that the flu virus is a variable that changes yearly. No single vaccination can protect you from all the strains. The worst flu epidemic in history took place in 1918, claiming the lives of 40-50 million people, which is over half of the UK’s present-day population.

What’s even more worrying is in 2015 the fatality rate for dementia patients who had received ineffective flu jabs increased. A Medscope study revealed that those with dementia are twice as likely to die from flu. Those with dementia and Alzheimer’s disease may require live-in care and specialist care services specific to their illness and are more susceptible to certain illnesses, therefore creating a cause for concern. Here are five things to take into consideration for dementia patients during flu season:

1. Their immune systems are weakened


Alzheimer’s disease is caused by plaques of protein (known as amyloid) building up in the brain, resulting in a loss of connection between the nerve cells of the brain which in turn kills the brain cells. The creation of the plaque is triggered by the immune system, and due to the imbalance of chemicals and lack of receptor in the brain, the immune system is cannot effectively work to its full potential. This means that those with Alzheimer’s and Dementia are more susceptible to smaller illnesses that a stronger immune system can fight off, as the receptors that help their immune system may be damaged or dead. 

2. They run a higher risk of complications


Due to the weakened immune system of patients with Alzheimer’s disease and Dementia, they are at higher risk of the flu turning into more severe illnesses such as pneumonia and bronchitis which can be fatal. The flu can cause further behavioural issues in Alzheimer’s and Dementia patients and therefore require more complex care to help them overcome their illness. 

3. They're more susceptible if access to care is limited


It is common knowledge that Dementia and Alzheimer’s patients require more specialist care, albeit home care, live in care services or domiciliary care. Something as simple as showering, washing hands and eating a healthy and balanced diet can help prevent the flu, which is why it is so important that they have access to the right care. If patients are not living in specially equipped care homes or sanitised homes that do not have easy-to-clean ergonomic surfaces, they will be more susceptible to viruses. They may forget to treat the early symptoms of the flu and lose track of the medication that should be taken.

4. The flu vaccination is the most effective preventative


As no strand of the flu is ever the same, there is not one single vaccination that can prevent you from getting the flu. Studies have shown that the vaccination is 50-60% more likely to prevent flu however, there is still a chance of contracting the flu. That being said, the flu vaccination is the most effective way to prevent contracting the flu, and if it doesn’t interfere with the patient’s medication or put the in a life threatening situation, it should be considered.

5. There are other preventative measures


Although there is no solid way of stopping Dementia and Alzheimer’s patients from contracting the flu, there are ways it can be prevented. Washing your hands, regularly changing your clothes and sanitising and cleaning everything will help to stop germs and bacteria spreading, therefore reducing the risk of flu. 

If you suspect that a loved one of family member is suffering from Alzheimer's or dementia, or you are looking for home care support for someone with these diseases, please do not hesitate to get in touch. Our team of professionals are always willing to help.

Film and television are increasingly choosing to use dementia and Alzheimer's as plot points, or even to drive entire narratives. It is no secret that dementia has a prevalent place within our society, with 850,000 sufferers in the UK alone; this number is expected to rise to 1 million by 2025

With so many people affected by dementia and Alzheimer's, the coverage of these terminal illnesses is more than welcome, as it raises awareness and gives the public some insight into what those diagnosed go through. However, there are some myths regarding the portrayal of people with dementia that we'd like to dispel.

1. Alzheimer's disease is not a romantic or glamorous illness

Nick Cassavetes' film adaptation of The Notebook (2004) tells the tale of Noah Calhoun reading to his wife Ali. Every day, he reads their love story from a worn-out notebook in a bid to jog her memory, which has been ravaged by Alzheimer's disease. The film has been heralded as one of the most romantic movies ever, thanks to its tale of undying love. However, The Notebook romanticises Alzheimer's within a family, suggesting that everything will work out in the end given nothing more than a simple memory jog. In fact, many people forget that Alzheimer's disease is even involved in the film.

Memory loss is one of many symptoms caused by Alzheimer's disease, and this illness has an irrevocable effect of both the patient and their family.

2. Dementia isn't a 'funny' disease

When a comedy show approaches the subject of dementia or Alzheimer's disease, the results can often be compassionless and cruel. This has been seen in many television shows (Pete's mother in Gavin and Stacey, and Abe from The Simpsons). A more recent case is the representation of Cloris Leachman's character 'Maw Maw' from American sitcom Raising Hope. The Fox show has come under fire for being "not funny, but insensitive and cruel". Maw Maw is often the butt of the show's jokes; she rarely has any lucid moments, mistakes her grandson for her late husband, and forgets to put a shirt on.

Raising Hope makes caring for dementia sufferers look simple and fun, when caring for a person with dementia requires patience, understanding and strength. Caring for someone with dementia costs roughly £30,000 annually, but family carers of people with dementia save the UK economy £1 billion annually.

3. There is more to Alzheimer's disease than memory loss

Alzheimer's disease has become synonymous with memory loss, as seen in The Notebook (2004) and National Lampoon's Christmas Vacation (1989) among others. However, there is so much more to this complex disease. As mentioned earlier, forgetting places, names and memories is one of the many symptoms of Alzheimer's, but the majority of patients relate to a feeling of sheer panic as they cannot find a connection to anything in their surroundings. They do not recognise anything around them, and everything becomes depersonalised.

Dementia requires complex care and shouldn't ever be diminished to just one symptom.

4. Dementia has no gender preference

Until recently, actors who portrayed sufferers of dementia were predominantly female. Still Alice, The Notebook, Grey's Anatomy, The Iron Lady and Iris all show women suffering from dementia and Alzheimer's disease. However, dementia does not have a gender preference; the older you get, the more likely you are to suffer from dementia, and because women tend to live longer than men, there are more female sufferers overall. 61% of dementia patients are female, and 39% are male.

5. Dementia isn't a rapid disease

Still Alice (2014) tells the story of linguistics professor Dr Alice Howland and her poignant battle with early-onset dementia. The film has been recognised as a fairly accurate portrayal of what it is like to have Alzheimer's disease, apart from the fact that Alice's decline happens in under a year. Alzheimer's disease and dementia can take as long as ten years to fully develop; vascular dementia is the quickest form of dementia to develop, but it is incredibly rare in anyone under the age of 65.

If you suspect that a loved one of family member is suffering from Alzheimer's or dementia, or you are looking for support for someone with these diseases, please do not hesitate to get in touch. Our team of professionals are always willing to help.