Dementia end of life care: what to expect

What does end-of-life care mean, and what does it involve?

End-of-life care is a term referring to the medical care and general support given to a person who is in the final stages of a terminal illness. Its aim is to focus on comfort and quality of life rather than curing the condition, which means managing pain and other distressing symptoms, providing emotional and psychological support, and addressing any spiritual needs the person may have, or other requests as they approach the end of their life. This type of care may involve a hospital or hospice service, but it can also be carried out in a person’s own home, which is often preferred for comfort and to enable family and loved ones to stay close. End-of-life care offers comprehensive support to people with dementia and their families by advising on advance care planning, respecting the person’s wishes regarding medical interventions, and ensuring a dignified and peaceful passing. The goal is to ensure comfort and the best possible quality of life in the final weeks and days.For people with dementia who have reached the advanced dementia stage, they may experience symptoms such as pain, breathlessness, issues with eating, infections (such as respiratory infections or urinary infections), and may display unusual behaviours or say things that do not make sense. One study found that in people with dementia, the symptoms most experienced in the month before dying include pain, fear or anxiety, and agitation, and the person may also resist care. In the week before dying, they may also experience difficulty with swallowing and further pain.The end-of-life stages of care can bring up a lot of challenging emotions for all involved, as this time can be difficult for loved ones to witness without being able to help ease the person’s burden. If you or your loved one has received a dementia diagnosis, planning for end-of-life is a difficult and unpleasant conversation to have, but a very important one in order to ensure they can die with dignity and respect when the time comes. 

How can pain be managed during end-of-life care?

Dying with dignity, with as little pain as possible, is of the utmost importance when someone is in the end-of-life stages of dementia. It is estimated that up to 63% of people with dementia experience pain, and this may come from various sources such as arthritis, constipation, or infections, which can in turn cause further symptoms such as depression or behavioural symptoms. A person with advanced dementia may struggle to effectively communicate when they are in pain, so their caregivers should keep an eye out for signs of discomfort so this can be treated quickly. Tune in to their non-verbal cues, and ask them direct questions about any pain you suspect. You could also ask them to point to the location of pain. There are a number of ways people can manage pain, even when care is taking place at home. Pain during end-of-life care can often be managed with the help of their GP through a combination of medication, therapies, and supportive measures tailored to the person’s individual needs. Strong pain relief medications are commonly used for the severe pain that can be caused by dementia complications, but this can usually be adjusted as the person’s level of pain increases to ensure they are kept as comfortable as possible. Milder pain relief can also be administered if symptoms are less severe, along with additional medications to treat specific symptoms, such as antidepressants or anticonvulsants. In addition, it can be helpful to organise complementary therapies to keep the person comfortable, such as massage treatments and other relaxation techniques. Getting regular pain assessments from a medical professional is important during this stage to ensure pain is being properly managed, and to adjust doses as needed. Ultimately, the goal is to provide as much pain relief as possible to keep the person comfortable, while not causing adverse reactions or side effects.Pain relief and general comfort is not always about administering medications. It can also be about making small tweaks to the home environment to increase their physical comfort, such as adjusting their bedding so it sits just as they like it, doing a regular skin care routine to keep them feeling fresh, and using additional pillows for support when they are sitting or lying down for a long time. Palliative care is the term for the type of care that focuses on pain relief, symptom management, and ensuring quality of life is prioritised for people with advanced dementia. Palliative care teams can offer this type of care from home, which can help to manage some of the physical symptoms, such as pain. According to research, 75% of study participants with dementia reported experiencing pain in the last 6 months of life compared to 60% of those with cancer, despite their pain control often being deemed inadequate.

What else can be done to support people during end-of-life care?

Supporting people at home during end-of-life care involves understanding their unique wishes and needs, from pain management to emotional support to small details that could bring them comfort, like surrounding them with their favourite objects or bringing them foods they enjoy. Some other things that could be beneficial for someone going through end-of-life care include: 

• Creating a comfortable, peaceful environment for them to spend their final weeks and days, such as playing soft music and maintaining a quiet atmosphere 
• Addressing any emotional pain they are in, answering any questions about the future, and ensuring they feel as calm as possible 
• Listening to their spiritual needs and arranging access to anything they need, such as spiritual texts, or organising visits from members of their religious group if desired 
• Ensuring effective pain and symptom management through both prescribed medications and alternative therapies if desired
• Minimising their stress as much as possible 
• Making sure they have access to anything that means a lot to them, such as photographs of family or having their beloved pet nearby for comfort 
• Providing assistance with daily activities, such as bathing and dressing
• Providing emotional support in the form of meaningful conversations with family and friends, or arranging professional counselling to alleviate anxiety or depression 
• Ensure they are receiving enough quality nutrition and hydration throughout the day, such as small sips of water or ice chips if they have dehydration, and soft foods if they have difficulty swallowing 
• Keeping in close contact with the person’s doctor or other healthcare professional in charge of care, as well as other caregivers, so everyone is on the same page 

The most important thing to remember during this time is to respect your loved one’s wishes regarding their care to ensure a dignified and compassionate end-of-life experience. In addition, other family and friends will undoubtedly find this time difficult and upsetting, so providing similar support to them – for example, having meaningful conversations, addressing their emotional needs, and facilitating quality time with their loved one – can help them process what is happening and manage their own emotions during this time. When someone with dementia suffers from severe memory loss in the final stages of their illness, it can be difficult to create connections with them, but simply being there and talking to them can provide comfort. A good tip to enhance this is to use sensory connections such as touching them on the arm while speaking, or putting on their favourite music.

What legal considerations should be taken into account during end-of-life care?

End-of-life care should be focused on the needs of the individual, however, there are certain legal aspects to consider that could make things easier on them and you. Most people do not want to think about these details during this difficult time, but spending some time (with the support of loved ones) to plan ahead and make sure the correct documents are in place can help to protect the best interests and desires of your loved one. If you haven’t already, some of the documents you may want to consider putting in place as far in advance of end-of-life care as possible include:

• A DNACPR – A DNACPR means a Do Not Attempt Cardiopulmonary Resuscitation order, and this means if a person’s heart stops, they wish not to be revived using Cardiopulmonary Resuscitation. 
• An Advance Decision To Refuse Treatment (ADRT) – This document is sometimes called a “Living Will”, and it makes clear which medical treatments they do not want to receive in the future. You can read more about this in our guide to making an advance decision to refuse treatment.
• An Advance Statement for Care – This document states what the person would like to happen if a time comes when they can no longer make decisions for themselves, and it can cover any aspect of future health or social care. You can read more about this in our guide to making an advance statement for care.
• A Health and Welfare Lasting Power of Attorney – This is a document to outline the person’s wishes regarding medical treatments and designate a decision-maker. You can read more about this in our guide to a health and welfare LPA.

These documents are best (and may only be legally binding) if they are put in place while the person is still able to make decisions for themselves and understands what is happening to them. If a person passes the point of being able to make decisions about their own care, it is too late to put these documents in place, and families may need to go through the legal system in order to gain rights to make certain decisions on their loved one’s behalf. Dementia is one of the conditions that forces you to think about these choices early, so it is wise not to delay having the appropriate conversations.

How does providing end-of-life care for a loved one affect caregivers?

Providing end-of-life care for a loved one can profoundly affect caregivers emotionally, physically and mentally, whether you are a close family member or not. Caregivers often experience a range of emotions during end-of-life care, such as grief, anxiety and stress, so taking care of yourself during this process is essential in order to continue looking after your loved one to the best of your ability. The physical demands of caregiving alone, such as assisting with daily activities like getting them changed into new clothes, can result in fatigue and burnout. Caregivers may begin to feel overwhelmed by the responsibility and decision-making involved in end-of-life care, and could even experience carer’s burnout as a result. The emotional toll can also strain relationships and lead to feelings of isolation. Despite these challenges, keep in mind many caregivers can still find the end-of-life care experience meaningful and fulfilling, as it allows them to provide essential comfort and support to their loved one during a critical time. Family carers are considered to be important for those in the advanced stages of dementia, but they too can experience distress, so it is important to take care of yourself and seek support if you need it. This might mean enlisting the help of a respite care service to take over caring duties while you take a much-needed break or a holiday, or connecting with support groups and counselling services that can give you a safe place to talk about how you feel.

What can caregivers expect after a loved one has passed?

Caregivers may experience a complex mix of emotions after the passing of a loved one, even after they have gone through a lengthy end-of-life process and were expecting this outcome. Deep grief, sadness, and even confusing emotions like relief can arise, but it is important to understand the root of these emotions usually comes from a desire not to see your loved one in pain any more, and a desire to no longer make the tough decisions involved in caregiving. Physical and mental exhaustion are common due to the prolonged stress of caregiving, so you should take some time to recover from this and see friends, family or a counsellor before you jump into practical tasks like managing your loved one’s legal matters.When your loved one passes away, you may want to look for bereavement support to address any feelings that may come up after spending time caring for someone going through the final stages of dementia. Explore the options in your local area, which may include charities and organisations such as:

• Bereavement Advice Centre – This service has a free helpline you can reach on 0800 634 9494 (available 9am–5pm Mon–Fri). The helpline can advise on the practical steps you need to take after someone dies. 
• Carers Trust – This service has lots of resources for UK carers to promote their wellbeing, which extends to helping when someone they are caring for dies. You can reach them on 0300 772 9600 (9am–5pm Mon–Fri) to ask for advice. 
• Carers UK – For practical support, to more general bereavement advice when someone passes, you can find lots of helpful information on the Carers UK website, including information about local carer meetups offering support. 
• Cruse Bereavement Support – This service is focused on helping those who have lost a loved one, and they have a lot of helpful advice on their website, as well as a helpline you can reach on 0808 808 1677 (9.30am–5pm Mon, Wed, Thurs, Fri, or 1pm-8pm Tues)
• Dementia UK – This service has a dementia helpline to help with various aspects of the condition, which you can reach on 0800 888 6678 (9am–9pm Mon–Fri, 9am–5pm Sat-Sun). You can also learn more about bereavement advice on their website.  

How can home care help support families during end-of-life care?

Home care can support families with all aspects of care, but many people feel it is especially helpful when they are going through the end-of-life care process with a loved one. In the late stages of dementia, professional carers can assist with medical needs, organise pain management with medical professionals, and take care of the daily activities required to ensure the person’s comfort and dignity. Caregivers can also offer emotional support and respite for family members who are spending long, difficult hours looking after their loved one. This can help to reduce stress and prevent burnout when caring for someone for many weeks or months. Home care services allow families to focus on spending quality time with their loved one in a familiar, comforting environment, by taking on the most difficult tasks. They can help to guide families through the complexities of end-of-life care, such as making sure a Care Plan is in place, and coordinating with medical staff, in order to ensure their loved one receives care that prioritises their comfort and dignity during this challenging time. At Home Instead, our approach to dementia care is pioneering, and our unique programme for Care Professionals accredited by City & Guilds is specialised for the home care environment, and created by dementia specialists and key medical practitioners from around the world. Whatever questions you have about the end-of-life care process for an older adult with dementia, we can help to talk you through the options you have – feel free to reach out to the friendly Home Instead team at any time. 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 Home Instead team to discuss your needs.