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 It was previously known as a Living Will, some people may still know it as that, but this is a more outdated term.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

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