The challenges of Young Onset Dementia are significantly different

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The challenges of Young Onset Dementia are significantly different

Many have the misconception that Dementia is a natural part of ageing…IT IS NOT!

Another common misconception is that Dementia is only prevalent in later years, again IT IS NOT.

Dementia, although not as frequent, can be diagnosed from any age and in the UK alone there are over 42,000 people with Dementia that are under the age of 65, which is around 5% of those with Dementia.

The challenges faced by those with a diagnosis of Young Onset Dementia are often significantly different to those diagnosed with Dementia at a later stage of their life.

Some of those challenges include:

Having to decide whether they can continue to work

For those that are still employed when receiving their diagnosis of Dementia, they will be faced with the unenviable task of speaking with the employer and discussing with their family and medical professionals to see exactly what they can continue to do, what they should expect and whether any work is possible and if so, for how long.

It may be that hours need to be reduced, roles need to change or adjust to capabilities, or perhaps work will need to stop completely.

Reducing hours, or stopping work altogether, can have a big impact not only financially (which we explore a little later) but also emotionally, physically and in terms of keeping the mind active. Without a daily routine and work to prepare for and keep you busy throughout the day we can often see a much quicker decline where there is not something else keeping the mind active and the person physically active and busy.

Having a bigger financial burden

A diagnosis of Dementia for someone  that is still working and still has a mortgage to pay can be devastating and bring a big financial (not to mention emotional!) burden that was never expected.

For many, their mortgage is the largest expense and if you are forced to give up work then your finances are bound to be lower. Some will be covered by Income Protection or other insurances which will be welcomed at such a difficult time, but for others the loss of an income due to an inability to work can be devastating.

It may also be the case that a spouse or partner, perhaps even an adult child, has to give up work or reduce their hours to help with the care. This may not be immediate but may be required as the Dementia progresses and as the needs of the person living with Dementia increase. This is something that will need to be carefully planned for as again, this could decrease the household income further.

Having dependents

Those that are diagnosed with young onset Dementia may still have people that rely on them, whether that be children, a spouse or partner, perhaps even their own parents or other loved ones and this can be difficult to navigate following a diagnosis of Dementia when it is inevitable that the care that they themselves will need will increase.

Receiving a diagnosis at any age is not ideal and comes with its challenges at any age BUT don’t forget…YOU ARE NOT ALONE!

There are places, groups, organisations and people that can help and support you through this, so please reach out.

We would love to hear your thoughts?

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

Caregivers! You are not alone in feeling…

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Caregivers! You are not alone in feeling...

Dementia is a diagnosis that not only affects the individual with the diagnosis, but affects everyone that is connected with them, both personally and professionally.

As a Caregiver you go through so much and you are not alone…although it may sometimes feels like it!

Here are just some of those feelings that you may go through (some more often than others!) as a Caregiver. There is nothing wrong with feeling any of these and certainly nothing to be ashamed of. 

Always remember to ask for help and support if you need it!

Depression
Guilt
Stress
Anxiety
Social Isolation
Loss
Giving Up Work
Physical Health problems
Loss of Control
Grief
Powerless

We are sure that there are so many other overwhelming feelings and emotions that you go through, as a Caregiver at one time or another, feel free to share these with us and please remember that…

YOU ARE NOT ALONE!

What are your thoughts?

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

Should we be concentrating on PROGNOSIS rather than DIAGNOSIS in Dementia?

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Should we be concentrating on PROGNOSIS rather than DIAGNOSIS in Dementia?

An important question that seems to be coming up ever more frequently is:

Should we be concentrating on prognosis rather than diagnosis?

Let’s start by defining each of those terms…

PROGNOSIS:

Noun

  • the likely course of a medical condition.
  • an opinion, based on medical experience, of the likely course of a medical condition.
  • a forecast of the likely outcome of a situation.

DIAGNOSIS:

Noun
the identification of the nature of an illness or other problem by examination of the symptoms.

Thus, it is evident that one clearly focuses on the current situation and issue at hand, whereas the other (prognosis) looks at what that diagnosis means, how it may progress and the likely outcome.

However, before taking such an approach, we need to consider whether we know enough, and can do enough, to give people a prognosis.

If we were able to give individuals a prognosis we have a few things to consider, for example:

Do individuals really want to know their risk factor, or score, when there is currently no known preventable measure, or measures, that can be taken?

Would this cause more harm, especially mentally and emotionally, than good?

Step 1: Identifying Risk

An important consideration here is whether giving someone a risk factor or risk score could make their prognosis worse. If an individual is delivered ‘bad’ news they may then submit to this and be less reluctant to live life to the full or take preventative measures.

In addition, a lot of training would be needed in order that such prognosis and risk scores are delivered and presented in an effective manner – this is unlikely to be something that is practicable within an already under resourced, and stretched, NHS.

Step 2: Tailoring Treatment

Much the same point as before, at the risk of sounding pessimistic, is it a step too far to expect our already overstretched and under resourced NHS to be able to offer customised treatment to each individual?

We are all too well versed with the phrase, “if you have met one person with Dementia, you have met one person with Dementia”, and we know all too well that no two individuals are affected by Dementia in the same way. Dementia is a condition that has over 200 different types (that we know about!) any many different forms, symptoms as well as conditions that accompany it for many individuals. 

A one size fits all approach will not work, but are we really able to offer tailor-made treatment to each individual?

Although this would be amazing, it just seems a bit too far out of reach at the moment.

Whilst, we are also pushing for new treatments and (dare we say) a cure…

Are we really ready for a prognosis?

We would love to hear your thoughts?

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

Can I make a Lasting Power of Attorney after being diagnosed with Dementia?

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Can I make a Lasting Power of Attorney after being diagnosed with Dementia?

As you may know, a Lasting Power of Attorney is put in place so that someone that you trust implicitly (known as Attorneys) can manage your finances & property and/or your health & welfare decisions on your behalf.

A Lasting Power of Attorney must be put in place whilst the Donor (the person giving the Power) has capacity, and a Certificate Provider is required to certify this in order for the Lasting Power of Attorney to be registered by the Office of the Public Guardian.

Once diagnosed with Dementia is it too late to make a Lasting Power of Attorney?

Whether a Lasting Power of Attorney can be created and registered after a Dementia diagnosis will depend on how soon the diagnosis takes place and whether that individual has capacity, lucid or ‘good’ days and is still of sound mind.

If the individual still has capacity or has lucid days where they are clear on their finances, current affairs and appear to be unaffected by the Dementia then it may well be that a Lasting Power of Attorney can be prepared at this time and instructions taken from the individual. 

A Certificate Provider will meet with the individual and go through, carefully and sensitively, the current circumstances and ask questions as to that individual’s circumstances and personal affairs, as well as current affairs in the news and media, to ascertain their general capacity and mental wellbeing. If the Certificate Provider is content that the intended Donor has capacity, and they are aware of the importance of the Lasting Power of Attorney and the extent of the Power that they are giving to their Attorneys, then the Lasting Power of Attorney can be applied for and registered.

When registering a Lasting Power of Attorney, it may be necessary to notify people that an application is being made in order to protect the Donor. Notification can be given to up to five people although this cannot be given to those that are being appointed as the Attorneys. This provides extra security for the Donor and allows the person, or people, being notified of the intended registration the opportunity to object to the Power being registered for any of the following reasons:-

  • if they believe that the Donor does not have mental capacity;
  • if the person being notified has a genuine belief that the Donor was under undue pressure to give the Power or is a victim of fraud;
  • if the person being notified has a genuine belief that the Attorney would act in a way that is beyond their powers under the Power or would not be in the best interests of the Donor;
  • if the Donor of the intended Attorney, or Attorneys, have already passed away;
  • if the Donor and intended Attorney were married or in a civil partnership and this has now ended;
  • if the intended Attorney does not have the mental capacity to be appointed as an Attorney;
  • if the Attorney is bankrupt;

Having both Lasting Powers of Attorney in place means that, the Donor is able to appoint the people they know and trust (whilst still of sound mind to make such a decision) to make decisions for them when they are unable to do so for themselves, and takes an unnecessary stress away from both them and their loved ones at, what is already, a difficult time.

We are always happy to have a chat with you about putting a Lasting Power of Attorney in place, the Powers that are available and whether this is still a viable option for either yourself or a loved one.

If you would like to have a free chat about Lasting Power of Attorneys, please contact us on  info@TotalLegacyCare.co.uk or 01727 865 121

Walking About with Dementia

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Walking About with Dementia:
How can we help?

It is common amongst those with Dementia to ‘Walk About’ or ‘Walk with Purpose’ and in some cases this can lead to the individual leaving their home and putting themselves in danger.

An individual with Dementia may Walk About for a number of reasons, including to relieve stress and boredom or even as a result of anxiety. The walking itself is not usually a problem and we are keen advocates of remaining active after a Dementia diagnosis, however, this needs to be managed to ensure that the individual is not putting their health or their safety at risk.

We try not to use the term ‘Wandering’ as this is quite a dismissive term that suggests that the person that in Wandering has no purpose or is wandering aimlessly and this is often not the case with those with Dementia. Although we, as an outsider, may not immediately see the reason for their Walking About, the individual will have a purpose and a reason for their behaviour but may not be able to communicate this, or may have become disorientated whilst walking, due to their Dementia.

Here we look at some steps that you could take if you find a member of the public Walking About that may be in need of some assistance.

One of the key points to overcome, in a public setting, is (unfortunately) stigma. Some people will ignore the individual with Dementia, or be reluctant to assist, due to their preconceived ideas about what the issue may be or because they do not understand the condition. (This is why we need more Dementia Friends!!!)

However, even for those that do not want to get involved, alerting authorities and the police of a vulnerable person is an easy but very helpful step to take.

If you feel that you able to assist a vulnerable person that appears to be Walking About, then the following tips may help:

Approach the person from the front, so that they are aware that you are approaching them and make yourself known to them.

Consider that they may have hearing issues and so, speak to them closely, without invading their personal space (none of us like our personal space being invaded!)

Try and stay calm and show this with your body language.

Speak slowly and take the time to listen to the individual.

Ask questions in a simple manner and only ask one question at a time. Allow time for the individual to respond.

Try and use non-verbal communication and gestures where appropriate, to simplify your questions or sentence.

Provide reassurance and try to keep the individual calm.

Request assistance from the police when safe and able to do so.

Try to stay with the individual for as long as possible and if possible, until the police or professional help arrives.

One thing that I would always advocate is:

Imagine it was your family member or loved one that had walked in to the local high street, how would you want a member of the public to assist them?
Be that person!

Alzheimer’s Society Helpcards

The Alzheimer’s Society provide FREE helpcards for those living with Dementia to carry around with them, so that it is easier for them to get help when out and about in the Community.

The free cards are a great tool and can be ordered here: 

https://www.alzheimers.org.uk/get-support/publications-and-factsheets/helpcards

 

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

A is for Alzheimer’s

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A is for Alzheimer’s
5 Early Signs of Alzheimer’s...
All beginning with A

Here we take a look at five of the early signs of Alzheimer’s and exactly what they mean…

Agnosia is where an individual is unable to recognise familiar objects, tastes, sounds or other sensations.

Amnesia is memory loss.

Anomia is the inability to remember the correct names of things.

Aphasia is where an individual is unable to express themselves through speech.

Apraxia is where an individual does not use an object for it’s correct use as they are unable to identify the object.

It is important to remember that having one, or a couple, of these symptoms does not necessarily mean that you or a loved one has Alzheimer’s and you should always seek professional advice but it is always important to keep an eye on changes and an early diagnosis can be so beneficial for those diagnosed and their loved ones.

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

How can I prevent the onset of Dementia?

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How can I prevent the onset of Dementia?

Dementia is often associated with growing older and is frequently mistaken for a ‘normal’ part of ageing…Dementia is NOT an inevitable consequence of ageing! 

The World Health Organization (WHO) have recently updated their guidance on Dementia and suggest that the most effective way to prevent Dementia is to maintain a healthy lifestyle.

So, what does a healthy lifestyle look like?

Healthy Diet

A healthy diet has benefits, not only in terms of Dementia, but in relation to our overall health and wellbeing. Following a healthy diet can also prevent other conditions and medical complications, such as reducing blood pressure and preventing or controlling Diabetes and other complications associated with weight gain and obesity.

There is evidence that following a Mediterranean diet is beneficial for  cognitive function and therefore preventing Dementia. A healthy diet is often suggested to be high in plant-based foods and low in meats.

Other foods that are thought to offer a positive contribution to preventing Dementia are fruit and vegetables, fish, nuts, olive oil and coffee. Those that have a high consumption of fish in their diet are linked to lower memory decline.

Regular Exercise / Physical Activity

Physical Activity is associated with brain health and can have a positive effect on the brain structure.

WHO has suggested that physical activity and regular exercise could prevent cognitive decline, or further cognitive decline.

Similarly to maintaining a healthy diet, taking part in regular exercise will have a positive impact on your overall health and wellbeing – physically, emotionally, mentally and socially.

Healthy Blood Pressure

Healthy blood pressure will be achieved where no Hypertension (high blood pressure) is present. High blood pressure could increase the risk of developing Dementia.

Maintaining a healthy blood pressure can be achieved through medication, if it is not possible to control and manage this yourself through diet and exercise (medical advice should always be sought).

As with the previous steps that can be taken to prevent Dementia, maintaining a healthy blood pressure will also have a positive impact on your overall health and wellbeing and contribute to a healthy lifestyle.

Healthy Cholesterol Level

Similarly to maintaining a healthy blood pressure, we should also look to manage and maintain a healthy cholesterol level. Unhealthy cholesterol levels is known as Dyslipidemia. 

There is evidence of a close link between high cholesterol levels and the development of Dementia and so managing  a healthy cholesterol level, especially during mid-life ages, can help to reduce the risk of cognitive decline and Dementia.

Keeping the Mind Active

Keeping your mind active has a wealth of benefits throughout your entire life and shouldn’t stop as we grow older. 

Cognitive stimulation and activity can prevent or reduce cognitive decline.

Activities to keep the mind active can be achieved for all abilities from puzzles to wordsearches, crosswords, sudoku or even a Rubik’s Cube!

Cognitive Stimulation Therapy could also be used to promote and encourage cognitive activity.

Stop Smoking

Dependence on tobacco is the number one cause of preventable death globally and there is evidence to suggest a noticeable link between smoking tobacco and Dementia.

Stopping smoking could not only positively impact cognitive decline it may also promote and encourage other health benefits and help to contribute towards a healthy lifestyle.

As of yet, there is no cure for Dementia but with continuing research, and the condition affecting so many lives, this is something we strive for.

There is not just one cause for Dementia. As we know, Dementia is a condition that takes a variety of forms and presents very differently depending on the individual.

Living a healthy lifestyle not only has the potential to prevent, or at least push back, Dementia, it also encourages and promotes a better quality of life and can prevent so many other conditions and medical complications.

What are your thoughts?

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

Happy Dementia-Friendly Christmas

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Happy Dementia-Friendly Christmas

For many of us, Christmas is a fabulous time of year that we really look forward to; spending time with family and friends, eating lots, celebrating and enjoying the festivities!

However, for those affected by Dementia, whether that be those living with Dementia, their loved ones or carers, Christmas can be  a difficult time. 

So, what can we do to encourage a Dementia-Friendly Christmas?

Inclusion

We all love feeling that sense of inclusion and belonging, this is no different for those living with Dementia! 

There is always something that those living with dementia can be included with, family games, helping to decorate the tree or the Christmas cake, perhaps even help with the table setting.

Getting involved with Christmas activities is fun at any age, from decorating Christmas cards and decorations, through to baking, cooking and festive games.

Perhaps you could even look back at past Christmas’ with your loved ones and reminisce on their memories from times gone by.

Gradual change is easier to deal with

Keeping an environment familiar for those living with Dementia is extremely important and so if you do want to add some Christmas Decorations, think about doing this gradually, over time so as not to cause any overwhelming feelings.

This can avoid big changes and allow the person living with Dementia to get used to (and enjoy!) the small, gradual changes.

Routine

Keeping to a routine is important and can prevent anxiety and frustration.

So, over the christmas period try and keep to as much of the usual routine as possible (such as meal times) and try not to introduce lots of new things at once as this will be overwhelming and the person living with Dementia may struggle to cope.

Medication

This may sound like a common-sense approach but with everything else that is going on over the festive period and everything that you have to remember, having enough medication can often slip through the net.

It is so SO important that your loved one has enough medication to see them through the festive period, especially if they are going away or going to stay with family members.

Your loved one’s GP or pharmacist may not be available over the festive period and so having enough medication is imperative.

Quiet Time

As much as we all love the festive fun, we can all appreciate some down, or quiet time.

Having a separate room or area that a loved one with Dementia can go to and relax in, to take some time out and unwind, is helpful.

We all appreciate how overwhelming it can be when we are in loud places with lots of people, especially when it is not an everyday occurance, and so allowing a loved one with Dementia the opportunity to take some time out can be extremely beneficial.

Food and Drink

A sudden change to the diet of someone living with Dementia can be overwhelming and also have a negative effect on their digestion and health so it is worthwhile being mindful of this.

It is also important to remember that someone living with Dementia may be overwhelmed when faced with a full plate of food, especially food that they are not used to eating, and so being mindful of what, and how much is put on to their plate can be helpful.

We would love to hear your advice and tips for a Dementia-Friendly Chritsmas! Please drop us a message on Info@DementiaTLC.co.uk or comment below.

 

Wishing you and your families a FABULOUS FESTIVE SEASON!

How does Dementia affect sleep?

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How do the most common types of Dementia affect sleep?

You may notice that those living with Dementia, especially in the later stages, seem to spend a lot of time sleeping, but why is this?

We understand that it may seem out of the ordinary, even concerning, for the caregivers and the loved ones of those living with Dementia if a change in sleeping habits is seen, especially a marked increase in the amount an individual is sleeping but there could be an explanation…

As the Dementia progresses the damage to the brain increases and this can cause the person living with Dementia to sleep more, especially as the individual becomes more frail.

The damage to the brain, of a person living with Dementia, will make their usual daily activities much more of a task and more complex, making it more draining on the individual and causing them to sleep more, both during the day and at night.

Medication prescribed to those living with Dementia, to control and alleviate their symptoms, may also contribute to how someone living with Dementia sleeps and how drowsy they are feeling during the day. This again, may cause someone living with Dementia to sleep more.

It is not uncommon for those living with Dementia to increase the amount that they sleep during the day which leads them to being restless and unable to sleep during the night time and so although it may, at first instance, appear as though the individual is sleeping more, it may well be just that their routine, and the times that they sleep, have changed.

One common symptom of Dementia is disorientation to time and place. This can have a major impact on an individual’s sleep as when they are disorientated to time they may be unaware of whether it is day time or night time, when they initially wake and so get up and ready for the day in the early hours of the morning or during the night. This will, of course, impact the time that they are able to stay awake in the day.

Specific types of Dementia may cause specific symptoms that will affect the quality of an individual’s sleep, or even their ability to sleep at all. Symptoms may include hallucinations, breathing difficulties and restless legs, all of which can disturb an individual’s sleep or make getting to sleep extremely difficult.

As individual’s age, our quality of sleep declines and we have less deep sleep, which helps us to feel refreshed and rested and also keeps the brain healthy. Thus, we may find ourselves sleeping more to achieve that feeling of being refreshed and rested and this is no different for those living with Dementia.

It is, however, important to remember that where there is a sudden change in an individual’s sleeping pattern or behaviour, or something just doesn’t seem right, then you should always seek the opinion of a GP or healthcare professional to ensure that there is no underlying issue, such as an infection, that requires attention.

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk

What to do after being diagnosed with Alzheimer’s

What to do after being diagnosed with Alzheimer’s

Whether receiving a diagnosis for yourself or a loved one, it is a very difficult time, so much information to take in and lots of changes on the horizon. It can be overwhelming.

Depending on where you are on your journey when the diagnosis takes place, may depend on the amount of information you already have and what is available.

Here we set out a simple list of steps that should be taken upon diagnosis to help you set off on the right path…

Knowledge is Power

You may have had experience with Alzheimer’s or Dementia before, or this may well be your first encounter, either way there may be symptoms that you are not aware of or have not experienced before.

The more you can learn the better. The phrase “forewarned is forearmed” comes to mind. The more we know, the better we can prepare.

There is a lot of support around online, groups, professionals, carers, families and individuals that have also been diagnosed all navigating a similar journey. Linking up with these groups and support can be beneficial mentally and emotionally.

Allow yourself to feel

As we have said, receiving a diagnosis for yourself or a loved one, is a very difficult time, so much information to take in and lots of changes on the horizon. Allowing yourself to go through the emotions you are feeling is okay.

You are not superhuman or a robot and taking time to acknowledge and process those emotions is invaluable.

There is no ‘correct path’ of emotions to take and so feelings of sadness, anger, frustration, disappointment and disbelief are all natural feelings.

Getting into a Routine

Getting organised and into a routine can really help, not only in terms of getting into good habits but to help set out early where everyone is, what should be done when and to know what is expected when. This is vital as the Alzheimer’s or Dementia progresses as routine and structure will be a necessity.

Alzheimer’s affects memory and so having a structured routine can help keep track of medication, appointments, activities and day-to-day tasks.

Routine can help to reduce stress, anxiety and frustration and increase independence and feelings of security.

Ensure your LEGAL and FINANCIAL affairs are in order

Managing your financial and legal affairs is impossible once capacity is lost. 

A diagnosis of Alzheimer’s or Dementia does not automatically mean that capacity is lost and so arranging the correct legal authorities are in place, whilst you have capacity to do so is vital.

You may consider reviewing your Will but also putting Lasting Powers of Attorney in place so that the person that you choose, and trust, has the authority to deal with your matters (financial, property, health and welfare) when you are no longer able to do so.  

We are always happy to have a free chat with you about this – CLICK HERE

Look at what CAN be done

Once a diagnosis is received is very easy to see this as a disabling disease that will only get worse and therefore discount capabilities, activities and all those things that were much loved prior to the diagnosis.

THIS DOESN’T HAVE TO BE THE CASE!

It is so important to consider what can still be achieved, the preferences, opinions and desires of the person living with Alzheimer’s.

A diagnosis doesn’t always mean that a person is incapable and they won’t necessarily lose their desire to carry out those activities that they used to love. Being able to carry this on for as long as is safe can be great for independence, self-esteem not to mention physical, emotional and mental wellbeing.

Consider a Care Plan

It is inevitable that as the Alzheimer’s or Dementia progresses the need for care will increase, as will appointments with an array of professionals.

There may be a range of people helping with care, loved ones, family, friends and professionals, and a care plan can assist with setting out who is responsible for what, what is expected and when this is expected.

Having a plan for now, as well as having discussions about what may be needed as the condition progresses, and how this could be catered for can save a lot of stress in the future.

Diagnosis is NOT the End

It is natural to feel that there is no light at the end of the tunnel or struggle to see what there is to be grateful for when receiving a diagnosis of Alzheimer’s or Dementia as the road ahead can seem somewhat bleak and overwhelming however, this doesn’t have to be the case.

Taking into account point 5 above and looking at what can be done means that it is not the end…fun can still be had, knowledge can still be gained and relationships can still develop. 

Yes, things will be different but that does not mean it has to be worse.

You are NOT alone

Remember, whether you are the one that has been diagnosed, a loved one or caregiver…you are NOT alone.

There are lots of support groups out there, those that you can attend locally and National support groups that you can access online.

We have a list of upcoming events that maybe local to you on our website HERE.

There are no stupid questions and so we should not be afraid to ask for help or assistance.

Everyone’s journey is different, neither right nor wrong. We all have different experiences and can learn something new.

 

Do you have an experience you would like to share?

Or, is there a topic you would like us to write about?

Get in touch – Info@DementiaTLC.co.uk