While it might not be something you and your loved ones want to consider, planning ahead as a person with dementia is incredibly important. Individuals with symptoms can start creating plans that will help them, their loved ones and carers in the future ensure they continue to receive the best standard of care that adheres to their wishes.
Planning ahead could include housing options, medical wishes and end-of-life care plans. Today, we’ll explore how you can plan for the future when you’ve recently received a dementia diagnosis.
Why Is Planning Ahead with Dementia Important?
Planning ahead is so important for individuals with dementia because the condition is progressive, meaning symptoms will continue to get worse as time goes on. They may continue progressing to the point where you can no longer make decisions for yourself. Without plans in place that you have made in the past, your loved ones may have to create them for you.
Planning ahead can also help friends and family members by removing stressors, especially if you become too ill to communicate effectively. They can support your wishes and ensure you get the best care possible, provided they know what you want to happen in the future.
Creating an End-of-Life Care Plan for Dementia
There are several key components to a beneficial end-of-life care plan that you should consider after receiving a diagnosis of dementia. These include where you’ll be cared for, by whom, and who you’d like to be with you.
Writing Your Advance Statement
An advance statement explains your likes, dislikes, wishes, preferences and religious beliefs, and includes anything you need to remain comfortable. This is incredibly important for care plans as it explains how you’d like to be cared for. It’ll be used by your loved ones and carers if you lose the ability to communicate.
Things you could include in your advance statement include:
- Your favourite foods
- Hobbies and interests
- Your favourite music
- Preferences about where you’d like to live and be cared for in the future
- Your religious, spiritual or ethical views
- Your political beliefs
Advanced statements must be considered by your professional healthcare team when they determine what is in your best interests. This gives you peace of mind, knowing that even as your symptoms progress, you’ll be listened to and treated according to your wishes.
Deciding Where to Be Cared For
End-of-life care can be provided in various settings, including the home, a residential care facility, a hospice, or a hospital. You’ll have a choice of where you want to be cared for, although you can choose to change your mind at a later date as symptoms progress.
The care you’ll receive is most commonly known as palliative care, which is suitable for anyone diagnosed with a life-limiting illness. Instead of focusing on treatments, palliative care aims to keep you as comfortable as possible throughout your condition.
End-of-Life Care at Home
For many people, there’s no reason to move away from home after a dementia diagnosis. End-of-life and palliative care can be provided at home by private carers, such as those working with Country Cousins, or community nurses.
Specialist care can also be provided at home by community palliative care nurses, providing practical and emotional support for you and your loved ones. Social services may also recommend services and equipment to help you remain at home.
Country Cousins provides end-of-life care at home, so even as symptoms progress, you don’t have to worry about the upheaval and stress of moving into a new space. Remain in the comfort of home, surrounded by familiar belongings and loved ones.
End-of-Life Care in a Residential Home
End-of-life care can be provided in a residential or nursing home, where you’ll be surrounded by trained staff day and night. Care will be determined based on your wishes and preferences, in addition to professional advice from your healthcare team.
Residential care isn’t always suitable for individuals with dementia, especially as memory loss and confusion are two of the most prevalent symptoms. Moving home in middle or late-stage dementia might cause undue stress and anxiety.
End-of-Life Care in Hospice
Hospices are specialist units run by a team of doctors, nurses, social workers, counsellors and trained volunteers. They are designed to operate like hospitals, but with a more home-like atmosphere to keep patients comfortable.
Care provided in hospice is free, and often extends to close loved ones who require support after diagnosis and through the bereavement period. Unfortunately, there aren’t many spaces in hospice settings, so they’re not often available when individuals with dementia need them.
End-of-Life Care in a Hospital
Some people with dementia are admitted to hospital for end-of-life care. This is often not what patients and their loved ones want, as hospitals can be noisy and lack space for relatives to stay for as long as they wish.
However, sometimes a hospital is the best option as they have specialist palliative care teams working alongside your hospital doctors and nurses.
Creating a Care Team
Your healthcare team will be created for you, but you’ll have a say in your carers and complementary therapists.
Depending on your needs and where you choose to receive care, your team may include:
- Palliative care nurses
- Your GP
- Community nurses
- Hospice staff
- Social workers
- Physiotherapists
- Complementary therapists
- Home carers
You can discuss creating a care team you can trust with your GP or a specialist in dementia care. Getting to know your team early is essential so you can feel confident with them as symptoms progress and memory issues become more apparent.
To learn more, we have a helpful guide on how to create a dementia care plan with your family.
Other Things to Consider When Planning Ahead
Aside from your care plan, there are other things you should consider getting in order before your symptoms progress further. These include:
Advance Decision to Refuse Treatment
You may decide to include an Advance Decision to Refuse Treatment (ADRT) in your end-of-life care plan. This allows you to specify the medical treatments you’d like to receive in certain situations. It may also be referred to as a living will.
Examples of what you may include in your advance decision are that you don’t want to receive a blood transfusion under any circumstances or that you don’t want to be resuscitated if you have a heart attack.
When created correctly, advanced decisions are legal documents that must be followed by your healthcare team. You should provide a copy to everyone on your care team to ensure that everyone is on the same page regarding your future treatment.
Power of Attorney
A Lasting Power of Attorney (LPA) is a legal document that states who you have appointed to make decisions on your behalf. This may be a partner, family member or friend you can depend on. This ensures that all care decisions are made by your trusted loved one when your symptoms have progressed too far for you to make them yourself.
There are two types of LPA, including:
- Health and welfare LPA
- Property and financial affairs LPA
You must be able to prove that you have the mental capacity when you make your LPA, which is why it’s so important to organise this sooner rather than later after being diagnosed with dementia.
Will and Funeral Planning
A will is a legal document that states who should receive the things you own after you die, such as property, savings and valuables. If you already have a will, you may want to update it. Again, you need to prove that you have the mental capacity to create or update a will, making it crucial for individuals with dementia to sort quickly.
Some people decide that they want to have a say in their funeral plans. If you’d like to help plan your funeral, or create a payment plan to help loved ones with the cost after you pass away, you can consult your LPA or a funeral director to put plans in place.
Talk to Our Team Today
As the UK’s longest-serving introductory live-in care agency, we have been providing compassionate live-in care to those who need it since 1959 – all from the comfort of their own homes.
Give us a call today on 01293 224 706. Our experienced team is on hand to help from Monday to Friday, 9 am to 5 pm. Alternatively, contact us through our online enquiry form.
