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. 

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 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.

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

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.