The benefits of Palliative Care for Dementia

Discovering the benefits of Palliative Care for Dementia

Palliative care tends to be associated with physical conditions such as cancer, and is often overlooked for dementia. However, there are a wealth of benefits this type of care can offer, both for those with dementia and for their families and caregivers. 

Here, we are taking a look at what palliative care looks like for people with dementia, the benefits of pursuing this type of care, at what stage palliative care might begin for someone with dementia, how to access it, and the questions you might want to ask when choosing a dementia carer. Whether you are in the early stages of dementia yourself and would like to plan out your care in advance, or you are looking after a loved one with dementia, palliative care can be extremely beneficial and is certainly worth knowing about for your future needs.  

At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of domiciliary care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about palliative care, we can help. 

What is palliative care?

Palliative care is often associated with end-of-life care, but it is important to know this is not the only situation it is used in. Pain relief and symptom relief are the key focus areas of palliative care, and this can be relevant for a number of circumstances – both in the case of life-limiting conditions, and in long-term conditions that have the potential to be cured. You can learn more about this type of care in our guide: What Is Palliative Care? 

Anyone living with a serious illness that is causing them significant pain or distressing symptoms can find palliative care beneficial, as it aims to improve quality of life. With the help of specialist doctors and nurses, a person’s loved ones and home carers can work together to make them comfortable and pain free. 

If you would like more clarity on how palliative care differs from end-of-life care, you can learn more in our guide: End Of Life Care vs Palliative Care

palliative care for dementia

Why is palliative care relevant for people with dementia? 

Dementia is a progressive neurological disorder that impairs cognitive function beyond what is expected with normal ageing, and it can cause common symptoms like memory loss, communication issues, impaired decision making, mood and personality changes, and more. These symptoms are often minor in the early stages, but will progress with time until they impact the person’s daily life, reasoning skills, physical abilities and more. 

If you are looking after a loved one with dementia at home, you may find helpful information in our guide to Caring For Someone With Dementia At Home.

Palliative care is relevant for people with dementia as they will eventually require help with a number of daily tasks. This could be things like managing their medication for symptom relief, or emotional support as their cognitive abilities decline further. At some point in the late stages of dementia, palliative care will transition to end-of-life care in order to help people in their last months, weeks or days of life.

Palliative care is also extremely relevant for the families and caregivers of a person with dementia as it can help loved ones to better understand what is likely to happen next, enable them to plan ahead, help them process their emotions, and more. 

Dementia is not often thought of as a condition that requires palliative care, and this may be due to public perception. For example, in a recent poll it was found that of a sample of over 2000 people in the UK, just 42% understood dementia is a terminal condition. This could be why those with dementia typically do not access palliative care services. In fact, only 51% of people in the UK who responded to a survey said they understood palliative care can be beneficial for those with dementia.

Although different types of dementia will deteriorate at different rates, anyone with dementia will eventually reach the late stages of the condition and require end-of-life care. During this stage their needs will become more complex. As palliative care is patient-centred, those going through the end-of-life care process may find it is extremely helpful to have trained professionals around who can support throughout, explain what might happen, and provide emotional support for everyone involved.

How is palliative care beneficial for people with dementia?

There are many benefits palliative care teams can bring to the care process that will support someone with dementia. These include: 

  • Helping to better recognise what stage of dementia a person is in.
  • Helping to manage physical symptoms, such as pain – according to research, more dementia patients (75%) were reported to have experienced pain in the last 6 months of life compared to those with cancer (60%) but their pain control is often inadequate. 
  • Helping to understand, manage and alleviate their cognitive symptoms, such as agitation, anger or ‘sundowning’.
  • Helping improve their overall quality of life – a 2020 study on people with Parkinson’s disease and similar disorders found those who received palliative care scored 3 points higher in quality of life scores than those receiving traditional treatment.
  • Bringing in experts with specialised training to help with complex symptoms. 
  • Providing palliative care alongside other types of treatment that aim to improve symptoms or prolong life.
  • Providing expert advice to better understand people with dementia when their ability to communicate breaks down, and helping families understand their loved one’s needs.
  • Helping when important decisions need to be made, like whether or not a person with dementia would like to remain at home for end-of-life care, whether or not to move them to a care home or hospice, when the best time is to do this, what types of treatment are best, and more.
  • Helping to avoid unexpected emergency care – according to research, people with dementia who were flagged by their GP as having palliative care needs were found to experience fewer unplanned hospital admissions in the last 3 months of their lives.
  • Helping people with advanced dementia who develop swallowing difficulties, or when they no longer recognise when they are hungry or thirsty – palliative care teams can help to provide appropriate nourishment when needed.
palliative care for dementia

How is palliative care beneficial for the families of people with dementia?

There are also many benefits palliative care can provide for family caregivers looking after a loved one with dementia. These include: 

  • Helping to navigate the process of accessing necessary healthcare services and systems.
  • Helping navigate the emotional shift from family relationship to caregiver.
  • Helping to make difficult decisions by taking into account what is best for the person with dementia as well as what is best for the family.
  • Helping to point caregivers and loved ones in the direction of dementia resources, tools and support groups in the area.
  • Helping to recognise when a family caregiver needs respite care – past research found spousal caregivers of those with dementia had a higher mortality rate after their spouse was hospitalised than other spousal caregivers, and data from the 2023 State of Caring report found 47% of carers said they needed more breaks or time off from caring. You can read more about respite in our guide: Carer’s Burnout: Knowing You Need Respite.
  • Providing emotional support during tough times, and helping with anticipatory grief when someone is in the final stages of their life – research has found family members report feeling stressed and anxious during caregiving, as well as having feelings of being restricted and a poor quality of life. 
  • Helping with making an Advance Statement for Care and other logistical necessities that can be difficult to handle during this time, such as creating a Health and Welfare Power of Attorney, and the process of Making an Advance Decision To Refuse Treatment: A Living Will.

When does palliative care begin for someone with dementia? 

It can help to understand the different stages someone with dementia will go through as their condition progresses. These include early stage dementia, middle stage dementia, late stage dementia, and eventually end-of-life stage. You can learn more about each of these phases in our guide: Managing The Stages Of Dementia.

A person with dementia may start to receive palliative care at any time in order to improve their quality of life, as it can last for several days or several years, and can exist alongside other types of care. Typically, it is introduced in the late stage of dementia or the end-of-life stage. 

You may find more helpful information about the progression of palliative care in our guide: The 5 Stages Of Palliative Care

It can be difficult to recognise when someone is nearing the stage where end-of-life care will be needed, but a palliative care team will be able to help distinguish the different stages and let you know when it is time for the next phase of care to begin for your loved one. 

It is extremely helpful to have an End of Life Care Pathway document created early to make sure everyone involved understands what the person’s wishes are when the end-of-life stage comes. You can read more about how to plan for this in our guide: Understanding The End Of Life Care Pathway

palliative care for dementia

How does someone with dementia access palliative care?

If you are unsure whether this is the right time to ask your GP about palliative care for yourself or a loved one, you may find useful information on this in our guide: When Should Someone Be Offered Palliative Care?

You can organise palliative care at home if you or your loved one decides to remain there during the process. For regular home care, you will need to speak to a GP to arrange a Care Needs Assessment, which means the local social services team will visit to discuss the needs of the person with dementia, and do a financial assessment to find out if they are eligible for funded home care. 

Although there is sometimes a wait for this assessment, those who have been given a terminal diagnosis or who are considered to be in the late stages can request to have this process expedited to access the care they need faster. During the assessment, the assessor will ask more questions about what is needed, and take a look at how the person is currently managing at home. 

You may find further information in our guide to the Care Needs Assessment

A GP can organise for a palliative care team to visit on a regular basis. This means specially trained community palliative care nurses will provide palliative care at home, and this will include all of the practical and emotional support needed, as well as support for family caregivers. 

If you choose to look for private palliative care services, these are also an option, however you will be required to fund these yourself. At Home Instead, we provide person-centred palliative care at home with specially trained care workers to support people with dementia

We understand how challenging dementia can be for the person and their loved ones, which is why we developed a unique programme for our Care Professionals accredited by City & Guilds that specialises in the home environment. Our programme was created by ageing experts, dementia specialists and key medical practitioners from around the world, offering effective, compassionate and dignified dementia care in the comfort of home so you know your loved one is in good hands. 

If you would like more information about how palliative care works at home, you can read more in our guide: Palliative Care At Home: What To Expect

What should I ask when choosing a carer for dementia? 

If you are looking to hire a home dementia carer, there are a few ways to do this:

  1. Through the local council – you will need to undertake a Care Needs Assessment to access additional care support 
  2. By hiring a private dementia carer – for this, you will become an employer and be responsible for paying the carer yourself
  3. By employing a dementia carer through a managed agency like Home Instead – this means things like background checks and paying carers will be done for you

Depending on which route you choose to take, there may be a few questions you wish to ask when going through the hiring process, such as:

  • What experience do you have caring for people with dementia?
  • What experience do you have caring for people in the end-of-life stages?
  • What does palliative care look like for someone with dementia? 
  • How much experience do you have effectively communicating with a person with dementia who may have difficulty expressing their needs?
  • What support can you offer the family members of dementia patients?
  • With palliative care in mind, how might you handle challenging behaviours in a person with dementia? (You may wish to provide a scenario that is common for your loved one) 
  • How would you coordinate other healthcare professionals visiting the home to provide additional treatments?
  • How would you involve a person with advanced dementia in decision-making processes if they have cognitive limitations?
  • What resources or support services can you recommend in the area to help with the emotional and practical challenges of dementia care?
  • What measures do you take to ensure the comfort of a person with dementia near the end-of-life stage?
palliative care for dementia

You may find more helpful information on accessing home care in our dedicated guide: How To Choose & Arrange Home Care Services.

If you are interested in learning more about putting home palliative care in place for a loved one with dementia, our award-winning home care at Home Instead could provide the bespoke, person-centred care you are looking for. We aim to make arranging this as simple and straightforward as possible to avoid adding more stress to your experience, so if you would like to discuss, get in touch now for a no-pressure chat about what could help the most in your current situation. 

We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the team to discuss your needs.

Michelle Tennant

Michelle Tennant, Clinical Governance Lead

I am a Registered Nurse of 20 years and have been in the care sector since I was 17 years old, I have had experience in every role that exists in a care company, including Registered Manager, care consultant, recruiter, scheduling, auditing, complaints, and networking! My role in the National office is Clinical Governance Lead, and most recently have been working with DHSC and Chief Nurse Deborah Sturdy to develop a clinical governance framework for the delegated healthcare activities in social care, I am continuing to take the lead on our Healthcare at Home service and drive this in the network. In addition to my nursing role, I’m 4 years into my PhD in Aging at Lancaster University, with a key focus on the retention of Care Professionals in the social care sector.