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Dementia Awareness

With Dementia set to be the biggest killer of the 21st century, having an understanding of the disease itself is essential. From the 14th to the 20th of May, Dementia Awareness week will be commencing to raise awareness for the disease which will affect 1 in 6 people in the UK.

What is Dementia?

Contrary to popular belief, Dementia is not actually a disease but instead refers to various brain disorders which affect brain function, causing symptoms such as disorientation and memory issues.

The most common illness which Dementia encompasses is Alzheimer's which accounts for two-thirds of all cases. The early symptoms of Dementia are often hard to diagnose as they can be relatively mild but will often progress to sufferers requiring around-the-clock care.

How to Look After Someone with Dementia

Every single case of Dementia is unique meaning the care given has to be just as unique. Tailoring the care to their specific needs makes sure the most compassionate support is given whilst a sense of independence is maintained to preserve self confidence.

Providing efficient care for someone with Dementia also requires special consideration of both the individual's physical and mental state. Taking regular exercise breaks also means that side effects such as depression and social withdrawal can be avoided. It's all about taking each day as it comes and making the right decisions based upon the individual's needs.

How Does Dementia Awareness Week Help?

Being diagnosed with Dementia is a scary and unsettling experience for most. Research carried out by Dementia UK found that 45% of sufferers thought they would have to immediately stop driving a car, while another 22% feared they would lose their partner or friends.

By dedicating a week to show our support and care for those with Dementia and their carers, we can get closer and closer to finding a cure and preventing the destruction of more lives. Attending local fundraising events is an easy, fun way to show your support and dedicate a few hours towards a great cause.

How Can Sova Healthcare Help You?

Looking after someone with Dementia can be a challenge and can take its toll on your health and wellbeing too. If someone close to you is suffering from Dementia and you'd like some extra support or advice on what to do next, get in touch today.

Signs of dementia

As you may know, dementia is not disease but is actually a collective expression of symptoms which have resulted from damages to the brain. The symptoms and their severity will mostly depend on what is causing the dementia itself and, combined with a person’s overall health, will dictate the speed of deterioration.

1. Difficulty completing everyday tasks


This may be one of the less obvious symptoms of dementia but should be taken seriously nevertheless. Tasks which may have been completed with ease before may take the person longer to finish, or may be left unfinished if there is a sense of frustration. For example, someone might find it more challenging to sort their money out whilst paying for shopping or they may find it difficult to grasp the rules of a new game. As well as everyday tasks, their ability to learn new skills or understand the processes behind a new task may indicate that something is wrong.

2. Changes in mood


Although this one may be hard to notice in yourself, the shift in someone else’s mood is often a strong indicator that they are experiencing changes to their brain. The most common change in mood often manifests itself in depression, or a general sense of low mood which impacts their everyday life. Alongside these changes, there can also be a change in how someone approaches others. Someone who may have been shy and reserved may begin to be more confident and outgoing as a result of their judgment being impaired.

3. Apathy


As well as depression, someone’s general willingness towards tasks and everyday life may be impacted. They may lose interest in hobbies or activities that, before the onset of dementia, they were passionate about and looked forward to. Dementia can deter someone from wanting to leave the house and have fun; instead, they may prefer to stay inside and opt out of social interactions with friends and family.

4. Repetitiveness


When noticing changes in someone, repetitiveness may be one of the most easily recognisable symptoms. Someone may carry out a task such as cooking or making a note of something more than once if they are experiencing cognitive impairments. Repeating questions in conversations after they have been answered is also a common symptom. This can lead to frustration for all involved but can leave the dementia sufferer feeling confused and bewildered.

5. Difficulty adapting to change


In the early stages of dementia, someone noticing these changes in themselves can lead to a sense of panic and fear. All of a sudden, they may not be able to recognise people they once knew or they may lose the ability to navigate routes they were once familiar with. As a result of this, having a routine in place becomes imperative meaning that any slight changes to this cause a fearful and negative reaction. 

If you’re worried that someone you know or care for may be suffering from dementia, there are many ways for you to receive support and guidance. Contact us today to find out more.
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.