What is an Advance Care Plan (ACP)?

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What is an Advance
Care Plan (ACP)?

Kindly written by Debbie Callow RMN

An Advance Care Plan, known as an ACP, is an umbrella term that contains a plan made in advance of reaching the end of your life that details key wishes, preferences, and legal aspects of your care needs. It was previously known as a Living Will, some people may still know it as that, but this is a more outdated term. It is important for us all to complete but even more so for a person experiencing dementia as there is a risk of losing mental capacity as the disease progresses.

I’m Dementia Debbie, The Dementia Coach and I’m a registered mental health nurse specialising in supporting families facing dementia with tough transitions through their dementia journey. I believe education is key to helping the world understand dementia, after all knowledge is power, so let me help you understand some basics about what to consider in an ACP.

An ACP can encompass an array of documents such as an Advance Statement, Lasting Power of Attorney (LPA), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), Advance Directives (different from an advance statement). It can also include information related to after death such as Will information or funeral arrangements. It’s important to know that an ACP helps guide professionals and families in the right direction when a person has lost mental capacity and the team are trying to act in the person’s best interests. If a person still has mental capacity, they may wish to use their ACP to help them make decisions, as it allows you to consider tough decisions ahead of time. Trying to decide when an event is occurring can often mean our judgement is clouded as our emotions are heightened at this time. The ACP helps take away from that decision-making process at those challenging times when it can be difficult to think straight.  

Health and Social Care professionals will often use a lot of jargon, sometimes without even realising, and you may not know what that abbreviation or word means. Always ask a professional what they mean if they use a term that you are not sure about. Let me explain now what all those documents I listed entail:

Advance Statement

A personal statement of your wishes when you reach the end of your life, it is mainly focused on pre-death but can include details of where your Will is or who holds it, as well as your funeral wishes. People often want to include things like “I wish to be pain free”, “I wish to have my family around me”, “I wish to always be treated with dignity and respect”, “I wish to be cared for at home”. Consider though the deeper meaning to these statements, for example, what do you mean by “pain free”, do you want to be so dosed up on medications you are free from pain but not really aware of who is in the room, or would rather tolerate some pain so you can be more aware of your surroundings? Everyone will feel differently about this and it’s important to always consider what a statement really means to that individual. Similarly, someone who wishes to remain at home, that can be option A, but what if it was not safe to remain at home, under what circumstances would you consider an option B and C? Put these variations to your preferences in your Advance Statement, it can save a lot of heartache and guilt later on if people already know what you want if you couldn’t stay at home for some reason. You can find a template to complete an ACP on the Dementia UK website. (1)

LPA (Lasting Power of Attorney)

A legal document that enables a person with mental capacity to appoint a person/s to speak on their behalf about important financial and or health matters. If a person has already lost mental capacity, then they cannot get an LPA and may need a representative to apply to the Court of Protection to become a Deputy. There are 2 types of LPA, Financial & Property which can be active before a person loses capacity and Health & Welfare which is only applicable once a person has lost capacity. If an appointed Attorney is active, they should always be advocating for what that person would want and in their best interests. I would always recommend getting legal advice to complete these documents. A solicitor such as, Total Legacy Care, will talk through many scenarios with you to ensure the LPA is strong and lasting. You can find information about all of these matters at the Office of the Public Guardian. (2)

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation)

This is another legal document and the biggest misconception about DNACPR is that it means professionals are giving up on the person, it does not mean that! It only applies in the event of the heart stopping and whether you would then want CPR to try and restart your heart. It does not apply to any other health matter or care need.

It is a medical decision whether to put one in place but should always be done with consultation with the patient (if possible) and family. I think the easiest way to think about whether or not you or someone you love might need a DNACPR is;

Would it feel wrong to you to see someone aggressively pushing up and down on that person’s chest?

If you feel yes it would, speak to the GP about getting one put in place.

CPR is not a gentle process, it often causes bruising, skin tears, sometimes broken bones. CPR is only successful in 10% of cases that happen outside of hospital (3) and is 3 times less likely to be successful on someone with a cognitive impairment. (4)

Advance Directives

Another legally binding document and are about refusing life sustaining treatment. Not many people have them as the wording must be extremely precise and include phrases such as “even if my life is at risk as a result”. An Advance Directive informs of the treatment being refused and the circumstances in which you wish to refuse that treatment.

For example, specific treatment: I wish to refuse artificial feeding through a tube to my stomach or IV, circumstances: I wish to no longer receive food or fluids through a feeding tube when I can no longer swallow safely due to my dementia, even with the support of others, even if my life is at risk as a result.

The reason to put in your health condition is that this same sentence may not apply in different circumstances. A person with dementia may want artificially feeding if the reason they cannot eat is from a stroke which they are expected to recover from.

Advance Directives should always be discussed with your specialist consultant involved and with legal support.

I offer support to complete an Advance Statement and can talk through the other aspects discussed. You can follow me on Instagram @dementiadebbie or visit my website https://thedementiacoach.org/.

Reference resources

  1. Dementia UK ACP template https://www.dementiauk.org/wp-content/uploads/2020/07/DUK_ACP_form_editable_online.pdf
  2. Office of the Public Guardian https://www.gov.uk/government/organisations/office-of-the-public-guardian.
  3. Resus Council UK https://www.resus.org.uk/home/faqs/faqs-basic-life-support-cpr
  4. Arcand M. End-of-life issues in advanced dementia: Part 1: goals of care, decision-making process, and family education. Can Fam Physician. 2015;61(4):330-334. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396757/

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

RED: The colour saviour for Dementia?

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RED:
The colour saviour for Dementia?

Why is RED such an important colour to use for those living with Dementia?

Red is one of the final colours that a person living with Dementia will be able to see as their eyesight deteriorates and the Dementia progresses.

So, how can this be used when caring for those living with Dementia and why is it important?

Some common things that you may have noticed when caring for someone living with Dementia may be:

  • loss of appetite or eating a lot less than usual;
  • decrease in personal hygiene standards;
  • increase in falls;

One of the reasons that may be contributing to the above issues is COLOUR! It may sound a little strange but bear with us…

If you are eating soft, mostly beige/white foods, from a white/cream plate and are losing your sight, you may well be hungry but unable to see the food you are trying to eat properly.

What about putting that food on to a bright coloured plate, let’s say RED as this is one of the last colours that a person living with Dementia can see, and then put that same food – say mash potato, chicken or pasta – on to that plate. The food is so much easier to see and you may well see an increase in the amount being eaten.

What is the usual colour for bathrooms, toilets and washrooms? White, right?

Well, looking at what we have considered above; consider how daunting this could be to a person living with Dementia? If you are struggling to identify white objects and spatial awareness, then imagine how intimidating your bathroom may seem. Could this be a reason, or at least be contributing to the reason, that there appears to be a decline in your loved one’s personal hygiene?

How about trying to use red towels, red bathroom accessories, a red toilet seat cover and perhaps even a red toothbrush and flanel? This could make a real difference and encourage the person living with Dementia to use these items independently, or with a little assistance, and take care (or assist with) their personal hygiene.

Now, the main reason for falls in those living with Dementia, will not always be down to colour, nor can it be solved just with changing the colour of the walls, but a completely white room with largely white items is not going to be helpful to someone living with Dementia. Think about highlighting key points with bright colour- perhaps around the light switches, so that they can be identified – and adding objects that are brightly coloured to help the person living with Dementia to see these and increase their spatial awareness.

As with all of these tips, these may not work for everyone but it may well be worth a try.

We would love to know your thoughts and hear your experiences!

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

Rubik’s and Dementia

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Rubik’s and Dementia

Rubik’s cubes and Dementia…what is the link?

Well, let us enlighten you!

 

The Rubik’s Cube is often referred to as the IMPOSSIBLE TOY but everyone knows the iconic cube and it often brings back memories from childhood, whether that be elation at solving the cube or frustration at not being able to!

We are so passionate about the positive benefits that the Rubik’s Cube can have, not only for the younger generations but for ALL of us! Some of the benefits that we have already seen include include; dexterity, coordination, memory improvement as well as a reduction in anxiety, getting social, engaging and socialising with others (and maybe even those that you wouldn’t usually!).

So, where do we come in and what do we do?

We teach people, largely the older generation (we are talking 35plus, so definitely not old!), how to SOLVE THE RUBIK’S CUBE.

We have taken solving the Rubik’s cube and simplified it to open it up to all ages and abilities. Through trial and error, and with the help of a group of elderly participants, we have devised a course of eight sessions.

We have now filmed the videos to accompany the sessions and these are in the final stage of editing and so will be available for participants to watch and practise in between sessions. We will be sure to share these videos with you all once they are ready 😉

Our main aim is to HAVE FUN but solving the Rubik’s Cube keeps the mind active and helping the residents within a Care Home or Day Centre setting to learn (or re-learn) a skill – solving the Rubik’s cube, whilst having the benefits of improving their hand-eye coordination and giving them something a bit different from the norm.

There is an additional element of looking at whether solving the Rubik’s cube can stimulate and improve short-term memory, a symptom of Dementia that is common across most types of the condition. Keeping the mind active has numerous benefits and can keep connections within the brain communicating to improve a person’s daily activities and communication skills.

The ultimate aim is that the participants we teach can then continue to solve the Rubik’s Cube and keep their mind active but also gain enough confidence to pass on their skills to:

  •         teaching other residents or members of the Care Home and Day Centre;
  •         invite groups of children in (Rainbows/Brownies/Cubs/Beavers/Local Schools etc.)
  •         sharing with their own families
  •         teaching others in the community.

This will mean that once we have finished each project, the participants are left with the skills to develop their learning, activities and engage further with the community, even as our part comes to a close.

So, we are often found in Care Homes and Day Centres teaching our lessons on how to solve the Rubik’s Cube and we are currently in talks with an Autism Charity to develop a scheme for them too as the benefits for those with Autism could be just as positive!

This is a project we at Dementia TLC are super passionate about and are always happy to discuss.

If this is something that you would be interested in for yourself, a Care Home or Day Centre that you are involved in or just want to have a chat or find out more, please do GET IN TOUCH!

 

We couldn’t write an article about this without mentioning our latest involvement with Rubik’s…

🏆GUINNESS WORLD RECORD🏆

We are so proud to be a part of the Guinness World Record for… 

The most contributions to a Rubik’s Mosaic. 

Thank you so much to Rubik’s Brand Limited and Torgeir Amundsen (Cube Arting) and CONGRATULATIONS!

We absolutely LOVE teaching all generations how to solve the Rubik’s Cube and it was our pleasure to help as many as we could to be involved in the GUINNESS WORLD RECORD! 🧡

Solving the Rubik’s Cube has so many POSITIVE BENEFITS!

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

Decluttering to Create an Organised Home for Independent Living

Decluttering to Create an Organised Home for Independent Living

The home of someone living with dementia may have become cluttered because of a change in habit i.e. they prefer to keep their possessions where they can see them rather than store them away and risk not being able to find them or because they have lost the ability to look after their living space.

I wanted to share my experience of working with families in the early stages of dementia to create a safe living environment for longer independent living

 

Difficulties of Living in A Cluttered Environment

Living in a cluttered environment can make day to day living more difficult and confusing for someone with dementia.

It may cause: 

  1. Increased anxiety and stress from not being able to find what they need
  2. Increased confusion as useless things become mixed up with important items
  3. Increased risk of tripping as it becomes more difficult to differentiate one object from another
  4. Increased hygiene risk as it’s more difficult to clean a cluttered space
  5. Increased fire risk making emergency access more difficult

 

The Importance Of An Uncluttered and Simplified Home

Creating an uncluttered and simplified home can help to increase the chances of someone living with dementia to maintain independence for longer, in a safe environment. They can continue to perform daily tasks and avoid situations which may cause confusion.

In early dementia it is common for an individual to mislay items around the home and become upset about not finding the things that they need.

I have worked closely with my clients’ adult children or carers to create a new simplified living environment. This can be a stressful and emotional time for everyone. I have found that it works better if the changes can be made in the early stages when they are more likely to understand the need for it. At this stage they can be involved with the decision-making process of where to keep key items and making decisions on which items are important to keep and those that they no longer need.

 

Blissfully Organised’s Top Tips to Create an Uncluttered and Safe Living Space

ACTION PLAN 

Create a decluttering and organisation action plan for each room. The objective is to create a safe and comfortable living space. Understand the items that are important to them and their daily routine – medicines, keys, toiletries, clothing and kitchen essentials (their favourite mug etc). Once you know which items are essential you can start to eliminate unnecessary items. Simplifying the number of items will make it easier to find what they need, i.e. in the kitchen you can reduce the number of cups, plates, cutlery, glasses to the minimum required. In the bathroom you can simplify the items to have one of each, i.e. shampoo, toothpaste and toothbrush, soap, hairbrush etc.

A PLACE FOR EVERYTHING 

Designate fixed locations for everything in the home, i.e. medicines, glasses, keys etc. 

Agree where key items should be stored in each room.

FREQUENTLY USED ITEMS 

Keep frequently used items in view i.e. utensils in the kitchen or toiletries in the bathroom.

ALWAYS COMMUNICATE 

Never simply move things without communicating its new home. This can cause a great deal of stress.

LABELLING CAN HELP 

You can label drawers or use photos so they can more easily find what they need in cupboards without having to have everything in view.

UNWANTED ITEMS 

My clients are often reluctant to let things go because they feel that it may be useful one day or is wasteful to throw it away. 

I find it’s very important to reassure a client that the things that they no longer need will be recycled to a valuable new home.

If you need further advice or support on decluttering and organising the living space of a relative in the early stages of dementia please do not hesitate to contact me. 

I would love to support you.

Tracy Ross

Professional Organiser

Blissfully Organised

tracy@blissfullyorganised.co.uk

Tel: 07818 423 376

www.blissfullyorganised.co.uk

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