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 It was previously known as a Living Will, some people may still know it as that, but this is a more outdated term.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

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