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Two Together: Save £100!
Save £100 when you purchase two funeral plans together. Call us for more details.
Caring for a loved one with dementia at the end of life or facing a diagnosis yourself can feel overwhelming and disorientating. Alongside the sometimes intense feelings that can come with dementia at the end of life, the practical aspects of planning care and, in many cases, a funeral can also feel daunting.
Understanding how dementia progresses and anticipating the challenges ahead can help you and chosen professionals provide and request the best care while ensuring dignity and comfort for you or your loved one.
If you’re here reading this article because you or a loved one has been diagnosed with dementia, we want to acknowledge how difficult this time may be. This article is here to offer information and guidance on end-of-life care with dementia in mind, in hopes that you can feel more prepared to support your loved one, plan for the future, or know what to expect on your journey.
End-of-life care for dementia is all about providing or receiving compassionate support tailored to the unique challenges of the condition. Dementia is progressive, affecting cognitive and physical abilities over time. As it advances, you or your loved one may face difficulties with memory, communication, mobility, and daily tasks.
By planning ahead and anticipating needs, you can help make sure preferences are respected and comfort is prioritised. This proactive approach can provide you and your family a sense of control and peace of mind during this stage in your or your loved one’s life.
When you or someone you care about is diagnosed with dementia, planning for the end of life, though practical, might feel rushed or premature. What to do when someone dies may not be something you and your loved ones want to be attempting to figure out at the last minute, though it’s natural to want to focus on cherishing the time that you do have. Creating a plan can actually help make that time more meaningful and relaxed, and with the support of loved ones, you can approach these heart-to-heart conversations together with care and focus on what matters most to you and those closest to you.
An Advance Care Plan (ACP) is a document that outlines a person’s preferences and wishes regarding their medical care and treatment if they become unable to communicate or make decisions for themselves. It includes choices about resuscitation, medical interventions, and options like hospice care. It is particularly valuable for those with progressive conditions like dementia, where decision-making capacity is likely to decline with time.
Including family members, healthcare providers, and, whenever possible, yourself or your loved one with dementia helps ensure the plan truly reflects the wishes and values of the person it is intended to represent.
Treatment preferences
Expressly outlining preferences for treatment, or lack of, leaves nothing to question, should the suggestion arise. The plan should state whether you or your loved one would like life-prolonging treatments, such as resuscitation or mechanical ventilation. It may also include preferences for pain management, feeding tubes, and other palliative care options.
End-of-life wishes
Putting end-of-life wishes into words provides clarity about where you or your loved one would prefer to spend final days, such as at home or in a hospice or care facility, and addresses the need for personal, spiritual or cultural rituals that are meaningful during end-of-life care. These can include anything that is important for you or your loved one to mention, down to small details, leaving nothing to chance when it comes to needs being met during such a delicate time.
Seeking support to talk about your own end-of-life wishes or assisting your loved one in getting clear about them is an opportunity to build a stronger connection and ensure that decisions are made with care and understanding.
Involvement of trusted people
It’s important to name those trusted to be involved in an end-of-life plan. Having specific people involved enables you or your loved one to feel confident about what will happen. This directive is often created in collaboration with family members, healthcare providers, and, if applicable, a legal representative, and it may include appointing a Lasting Power of Attorney (LPA) to make decisions on you or your loved one’s behalf regarding health and finances.
Flexibility and review
While it is a formal document, an ACP can be updated as circumstances or preferences change. It is recommended that this document is reviewed regularly, especially after major health changes or a new diagnosis. It’s wise to review it following significant life events also, like the loss of a loved one.
After changes have been made, it should be shared with healthcare providers, such as doctors and palliative care specialists. Caregivers and family members involved in decision-making should also get the new copy, as should the appointed attorney or legal representative. Making sure everyone has access to the most up-to-date version of the ACP helps to avoid any confusion.
Legal and medical considerations:
Though it is not always legally binding, healthcare providers are generally guided by the plan’s contents when making decisions. An ACP can bring peace of mind to all involved, as choices and values have been formally established and witnessed.
Though it may be difficult to think about, creating a will and funeral plan are additional ways to ensure wishes are honoured and stress is reduced for everyone involved during a potentially challenging time. Here’s why these steps are particularly beneficial:
Dementia is a progressive condition, and creating a will and/or funeral plan early allows you or your loved one to express choices and get affairs in order while informed decisions can still be made. This sense of control can provide comfort and reassurance to all involved, especially the person living with the condition.
By taking these proactive steps, you or your loved one can ensure a legacy that reflects true wishes, simplify the process for family, and reduce uncertainties about end-of-life plans.
In the face of a dementia diagnosis, taking control of funeral plans can provide peace of mind and help to reduce pressures on loved ones when the time comes.
When considering the vast array of options on the market, you or your family may choose to compare funeral plan providers Aura. Aura is a trusted provider of prepaid direct cremation funeral plans in the UK, and is the only cremation services provider to have two direct cremation plan options rated five stars by independent experts, Fairer Finance.
Our empathetic team is dedicated to supporting you or a loved one at every step of the way, providing the attention and understanding everyone deserves. With transparent pricing, there are no unexpected costs for your family in the future. As a family-run company, we are committed to treating your loved ones with the same level of respect, compassion, and dignity that we would want for our own.
In the later stages of dementia, symptoms often include severe memory loss, inability to communicate, and significant physical decline. Patients may struggle with swallowing, lose their mobility, and face a heightened risk of infections. These challenges may demand round-the-clock care and close monitoring to maintain comfort and manage health complications.
Whilst it is important to bear in mind that no two dementia diagnoses are the same, common symptoms of late-stage dementia can include:
Cognitive and communication challenges
Physical decline
Behavioural and emotional changes
Indicators that someone is nearing the end-of-life stage include drastic weight loss, reduced appetite, frequent hospitalisations, and changes in behaviour, such as agitation or withdrawal. Healthcare professionals play an essential role in assessing these signs and guiding families through this delicate time.
Caring for someone in late-stage dementia often requires round-the-clock support, with a focus on comfort, symptom management, and maintaining a peaceful environment.
Your or a loved one’s physical discomfort, such as pain, difficulty breathing, and restlessness, can often be alleviated through palliative care treatments and guidance from a healthcare professional. These services focus on symptom management and making sure the environment feels tranquil, familiar, and supportive.
Even in advanced dementia, sentimental connections remain important. Activities like listening to music, gentle touch, or reminiscence therapy can bring a great deal of comfort. Family members and caregivers may also need support during this time, with grief counselling, talk therapy and support groups offering valuable resources.
End-of-life care varies between the several dementia types, and a person can be diagnosed with multiple types at once. For example, Alzheimer’s care focuses on cognitive decline, while rarer types like Lewy body dementia may require attention to movement disorders or visual hallucinations. Vascular dementia, caused by impaired blood flow to the brain, involves symptoms like strokes or cardiovascular issues, making specialised monitoring in these areas in addition to dementia care very important.
Each type of dementia often progresses alongside other health complications, requiring a comprehensive and compassionate approach to care. Tailored care plans are essential to address these differences effectively.
Palliative care can dramatically enhance quality of life by managing symptoms and providing emotional support. It can also sometimes reduce unnecessary medical interventions, allowing the person to spend more time in a comfortable setting.
Palliative care measures should be extensively discussed with medical professionals and those trusted to weigh in on such conversations.
Hospice care is designed for those who are deemed to be nearing the end of life and have a terminal illness, typically with a prognosis of six months or less if the condition follows its expected course. It offers holistic support, and early involvement of hospice teams helps create a smoother transition and comprehensive care during the last stages.
Some people understandably struggle to come to terms with their predicted outcomes and disease progression, making them hesitant to implement such plans. In such cases, they often require more time and the support of loved ones to process and understand the situation they face.
The duration of the final stage varies widely, ranging from weeks to months. Factors like overall health, age, and type of dementia influence this timeline. It might be difficult to face the unknown, but families in this situation may choose to focus on taking it one day at a time, and keeping their loved one as comfortable as possible.
Families can support their loved one by maintaining regular communication, being present, and collaborating with healthcare providers to adapt care plans as needs evolve. It is advised to assume the person with dementia can both hear and understand conversations being had, and that they are always treated with compassion and respect, despite their condition.
Caregivers often face mental and physical strain, alongside potentially difficult decision-making responsibilities and burn-out. Seeking respite care and connecting with support networks can help alleviate these challenging feelings. Inviting other professionals into the mix such as a death doula can be helpful, as they can act as a neutral presence who can provide direct assistance.
Planning for and navigating the end of life with dementia is a profound responsibility, and we hope this article has been helpful to you. By understanding the condition, preparing in advance, and accessing helpful resources such as prepaid funeral plans, those with dementia and their families and caregivers can provide and access compassionate care and support.
Our own founder, Paul Jameson created Aura in 2019, after receiving a terminal diagnosis of his own: motor neurone disease. He aims to share the insights he’s gained with families across the UK who are navigating the challenges of planning after a difficult diagnosis. He runs the company today alongside his son, Dave (our CEO), and Ben (our COO), a family friend. Every day, we strive to offer nothing less than the service Paul would want for his own family, to everyone in our care.
If you’d like our help with making funeral arrangements, whether today or as part of a prepaid funeral plan for the future, our Angel team is always on hand to take your call.
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