The information on this section of the website focuses on the implications of dementia as a progressive disease, and the typical care needs that are experienced by people in the later stages of dementia, and up until their death. Some people are keen to have this information relatively early in the disease journey, others prefer to wait until the later stages are more imminent. It is important to make the decisions that feel right for the people involved and in the unique circumstances they are experiencing. Whenever we are faced with information that is potentially unsettling or distressing, it is wise to have someone alongside us for additional support. This may be a family member, friend or a professional who can identify with the implications of the impact of the information for us. If any of the information provided here requires further clarification or is particularly unsettling, please arrange for a one-to-one support call with a member of the RDS Direct Support Team by emailing contact@raredementiasupport.org. RDS holds later stage carer sessions which may be of value.

People live for varying lengths of time with dementia, and everyone experiences the symptoms of dementia differently. The terms later stages, advanced stages and end stages are often used interchangeably. This can be confusing and unsettling as they each carry subtly different connotations depending on the context in which they are used. Dementia is a life-limiting disease, although some people may die of something other than dementia, such as cancer or a heart attack, before their dementia symptoms have become advanced enough to be the primary cause of their death. While some people with dementia may die of an unrelated cause, before their dementia progresses to the end-of-life stage, many people living with dementia will live with their diagnosis for long enough to reach the later stages and experience the symptoms associated with that. In its advanced stages, dementia does cause people to die. Although dementia is itself a life-shortening condition, people living with dementia are often affected in the later stages by another illness such as pneumonia. This is because dementia affects how the body copes with infection and with other physical problems. Pneumonia is the cause of death in up to two thirds of people with dementia.

The care needs of people living with rare dementia will change over time. As will the needs of their carers, family and friends. Because dementia progresses differently from person to person, it can be difficult to work out exactly when people are approaching the later stages. Although dementia is a life-limiting condition, people living with rare forms of dementia can also be affected by other events or illnesses. Sometimes, a fall, an infection or another health-related need can have a significant impact on the health of the person living with dementia. This can be the case at any stage of the disease, but in the later stages, the occurrence of additional health related needs can have a significant impact on prognosis. During this time, we might anticipate that the end of life is close but find that in some cases after the appropriate treatment, people return to being as well as they were before the fall or infection. It can be difficult for any reliable prognosis, or prediction about how much longer someone will live, to be made in the later stages of dementia. For example, respiratory (chest) infections can occur on a recurrent basis– and with each one comes the uncertainty about whether this might be the end of life. We often talk about ‘holding uncertainty’– meaning that we can’t know exactly when the end of life will be, but we are aware that the likelihood increases as someone’s dementia progresses and health becomes less stable. This uncertainty can be difficult to hold, especially over long periods of time, and is recognized as a significant additional stressor for people living with dementia and their carers. See the RDS website information on adapting emotionally for more information on holding uncertainty, and contact the RDS Direct Support Team for more support by emailing contact@raredementiasupport.org.

Support for people living through the later stages of dementia can be provided across a variety of settings. People may also move in and out of different settings and types of care provision over the course of living with dementia. For example, there may be periods of time where someone’s needs are best met in a hospital or care home setting, but once things settle, a return to care at home may be possible, with the necessary support in place. 

Colleagues at RDS are working to better understand the later stages of some types of rare dementia, in particular the later stages of posterior cortical atrophy (PCA) and primary progressive aphasia (PPA), and are expanding and developing the information and guidance available. Please see below for information about the stages of PCA and stages of PPA work that has been completed to date:

• Stages of PCA
• Stages of PPA

The experiences of people living with dementia and their carers are very valuable to researchers in helping to advise people in the future.​ If you would be interested in contributing your experience and expertise to this work please get in touch by emailing contact@raredementiasupport.org.

Difficult but important conversations

Many people put off talking about the things they really need to, including things they would like to resolve, until it is too late. Talking about death, dying and end of life wishes can be difficult and many people find it easier not to think or talk about it. Although it may be hard, talking with friends and family about the future can be reassuring and beneficial, providing the opportunity to put certain things in place, have important conversations and be prepared for some of the things that will arise when that time comes. 

It is important to make time for these conversations and it usually helps to start them sooner rather than later. Though difficult to start, these conversations can provide an opportunity for the person living with dementia to make their wishes known, so that the people around them are able to make decisions in line with the preferences of the person living with dementia, where possible. It is important to be as aware as possible of the needs of everyone involved. The person who has dementia, their family, friends and carers will all have needs and wishes which must be recognised and taken into account as far as possible. 

When we know we have a difficult conversation ahead, it can be helpful to write a list of the things that we hope to cover. Advance care planning documents can provide a helpful template for conversations about the diagnosis and what people expect, hope for and want for the future. These conversations can help everyone involved to make informed decisions and can bring peace of mind that we have taken steps to make sure that someone’s wishes are known, recorded and respected– as far as possible. Having these conversations provides an opportunity to explore options and discuss wishes and preferences, and to come to some conclusions about what may or may not be realistic. It is important to remember the needs of not just the person living with dementia, but also those around them.

Discussing funeral preferences in advance can help us ensure that whatever event is chosen to mark the end of life, it is one we know is fitting and in line with the wishes of the person who has died. These conversations open up the possibilities for a shared exchange of personal wishes, and allow us to identify aspects that we will need to make decisions about, such as particular pieces of music to play, photographs we might want shared, where a service might be held, whether there is a charity a person would like donations to be made to, preferences for burial or cremation, or any memorial event that might feel a fitting way to honour a person’s life with. Having a clearer idea about wishes and preferences can make it easier when the time of death comes.

Conversations won’t ever cover everything, and of course, things may change over time, but at least if we try to start these conversations early, we will have had the opportunity for important conversations before it is too late. However it is important to keep in mind that for a variety of reasons, these conversations don’t always work out. People living with dementia may not be able to anticipate their prognosis or may lack the insight to fully comprehend it– they may be in denial or simply not want to acknowledge or discuss it. It is also not always possible for the people closest to each other to have these conversations. In some situations, it may be easier for these discussions to take place with someone less involved or less close. A different dynamic may exist between the person living with dementia and other family members, friends, a nurse or doctor, which means these conversations may be easier for them to have. You may find the RDS website information on asking for help useful in thinking about who and how to ask for help with having these difficult but important conversations.

Medical staff do have a duty of care to have conversations about the end of life with people in their care and will be familiar with the processes of advanced decisions. National Institute for Health and Care Excellence (NICE) guidelines advise that people in the later stages of dementia are assessed by primary care teams to identify and plan the care needs they are likely to experience during later stages and towards the end of life. Palliative and end-of-life care are described in more detail later on this page.

If it is no longer possible to have these conversations with the person who has been diagnosed with dementia, it may still be helpful to have them with people who know them well, in order to try and appreciate what their and our joint wishes would likely be. It is important not to feel guilty if the conversations don’t go as we had hoped or expected. Having ‘opened the door’ to the possibility is often enough, and a significant step to have taken.

Sensory stimulation

Sensory stimulation often uses everyday objects that are easy to find and readily available, to connect with one of the five senses (hearing, sight, smell, taste and touch). Sensory stimulation can be used to help people living with dementia in a variety of ways. It can be used:

• as an aid to communication
• to facilitate a connection between people
• to increase interaction with immediate surroundings and the environment
• to calm, relax and soothe
• to provide pleasurable ‘in the moment’ experiences by way of the positive feelings it evokes

Activities involved in sensory stimulation are often linked to interests the person had prior to dementia and can help build a connection to everyday life, for instance:

• Someone who previously liked to watch or play football might enjoy watching football games, hearing the sounds of a football game, touching a football and/or looking at photos related to football.
• Someone who enjoys particular types of music, or used to play a particular instrument, might enjoy hearing the sound of their favourite music/instrument, touching the instrument, or watching someone play it.
• Instruments which can be tapped or shaken, and which provide a vibration as well as a sound can be used alongside familiar tunes or as an activity in their own right. Beating out a rhythm and taking turns to copy it, for example.

Alternatively, ‘touch blankets’ or ‘fiddle blankets’, sensory balls, or lights can offer sensory comfort and interest in the moment, irrespective of any previous interest or significance. See the additional resources section for some examples. There are lots of options available, and different options will work best for each person, so please shop around, and try different options to find what would work best. 

As well as providing an important aid to communication at every stage of the dementia journey, sensory stimulation can play an important role in the later stages and towards the end of life by providing:

• familiar sounds, smells and tastes to help people living with dementia to feel more comfortable and safe
• familiar, favourite and/or culturally meaningful songs and music
• gentle touch and massage, using familiar scents or favourite products
• comforting voices, stories or poems
• a gentle, relaxed environment, which may include not too much noise, soft lighting and a comfortable temperature

Diet, nutrition and swallowing

People living with any stage of dementia can have difficulties associated with mealtimes. However, these difficulties are increasingly common as people living with dementia move towards the later stages, when they may also include difficulties with chewing, swallowing and choking. It is important to get advice from a GP, dietitian or a speech and language therapist about diet, nutrition and swallowing issues. A GP will be able to make the necessary referrals. 

There are a number of reasons why dementia can affect eating and drinking. For example people living with dementia may:

• have difficulties recognising food or crockery etc.
• forget that they have eaten or that they need to eat
• develop changes in food preferences
• find it difficult to remain present for the duration of a mealtime
• get distracted more easily whilst eating
• find that taste acuity may diminish, with previously familiar flavours becoming unfamiliar or less recognisable

We can help to maximise a healthy dietary intake by thinking about the way we present and adapt food. For example, we can:

• look at the ways that colour contrasts might make food more obvious or appealing
• consider the textures and flavours
• cut food up into smaller sizes
• use side plates to present smaller, more frequent portions
• remove distractions
• make sure that there is enough lighting and appropriate seating
• provide verbal prompts throughout the mealtime

In the later stages of dementia, appetite tends to be reduced, and it becomes important to find ways of maintaining and encouraging an adequate calorie and nutrient intake. Presenting smaller portions, using a smaller spoon (if necessary and appropriate) and generally slowing down the mealtime or eating process can make mealtimes more enjoyable.

Providing snacks between meals can be a tasty and pleasant way to add pleasure whilst promoting an adequate calorie and nutrient intake. Examples of nutrient rich snacks include:

• cheese and fruit (pineapple, apple etc)
• cheese and crackers
• nuts, nut butter on bread or toast
• Spanish omelette
• rice pudding (can be fortified with milk powder)
• thick and creamy yoghurt (can be fortified with milk powder)
• malt loaf with cream cheese
• cereal bars
• toasted teacake with cream cheese and jam
• custard or flapjack

It is important to note that these options may not be suitable if the person living with dementia is having swallowing difficulties. Please ask your GP for a referral to a speech and language therapist for more support.

In the later stages of dementia, some people find they have less control over the processes of chewing and swallowing (sometimes referred to as dysphagia). There are additional risks associated with swallowing difficulties including discomfort/displeasure, choking, and chest infections (as a result of inhaling saliva, liquid or food). Serving soft food options that have a high nutrient value can help reduce the discomfort and choking risk, whilst providing nutritional value. It may be helpful to mash or soften foods so that they are easier to swallow. Liquids may need to be thickened with the advice and support of a dietician or speech and language therapist. It can be helpful to consider how a puréed meal or thickened fluid might look– and to continue to make meals as appealing as possible. Arranging the individual food components on the plate in the same way that they would have been presented in their original form, is more visually appealing and provides more cues for flavour, than one blended shapeless mass.

Where there are concerns that a person may not be eating enough or not getting sufficient nutrients from their food, nutrient dense food fortification may be advised. Options for fortifying foods typically include skimmed milk powder, Greek yoghurt, ground nuts, eggs, cheese, nut butters, pea protein powder and soya protein powder.  As people become less able to consume their usual quantities of foods and fluids, they may lose weight and at this stage, additional dietary supplements may sometimes be recommended, but this should always be alongside the advice and support of a speech and language therapist or dietitian. 

It is important that everybody eats well. It is often when we find ourselves pushed for time or feeling stressed that we tend to opt for less healthy, or comfort food options. Carers are just as important as the person living with the diagnosis when it comes to ensuring a healthy and safe diet. 

Place of care

Thinking about the ‘right’ place to be cared for can bring up anxieties, mixed feelings and differing opinions. It can be difficult practically and emotionally for everyone involved. 

Care can be provided across a variety of settings. Depending on the need at the time, different settings may be more or less appropriate, and it is possible to move between care settings over the course of an illness. Our own home, a care home, nursing home, hospital, clinic or hospice are some of the places where care can be provided. GPs, memory services, specialist doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, plus a range of charity and voluntary care providers can be involved in the care provision.  

There may be disagreement about where the best place for care is. It is quite common for people to have mixed feelings about needing to bring in professional help– be that in the form of extra care coming into the home or by considering care home options. It is typical for people to feel resentment at the intrusion of paid carers in their home, yet at the same time guilty that they can’t provide the necessary care themselves. Relationships between family members and friends are sometimes strained as a result of having to make these big decisions about people they love and care for. Trying to see the situation from other peoples perspective can help us understand their views and opinions, and to have more patience with and understanding of them.

People sometimes have anxieties about care home placement because it may be something that they or the person they care for has specifically asked not to happen. This can place enormous pressure on everyone concerned, even when it may be the best place for care to be provided, due to the level of care needs someone has.  

It is a good idea to look at options for care that are available in the area ahead of potentially needing them. None of us know what lies ahead, and it is possible that unforeseen circumstances may cause a need for care, ahead of the time we expect. It is helpful to know the places that we would be willing to consider before any such crisis point. Even without a crisis point, thinking ahead, knowing what is available, how to apply for a place and how much it costs, can bring a sense of control and reassurance that enables us to care more ably in the meantime. Requesting an ‘assessment of need’ from the local authority is a helpful start point for understanding what is available locally, and at what cost. A GP can request that this assessment be made, or alternatively, a self-referral can be made by contacting the local social services department and requesting the assessment be carried out. Read more on this in our Support after a diagnosis section.

It may be helpful to think in advance about the things that would make caring at home, or being cared for at home, impossible for us. These factors will be different for every person, but might include: frequent incontinence, aggression, safety concerns, increasing mobility needs or the need for the person with dementia to be helped with eating. It might also include us not being able to get out of the house to see friends or family, lack of sleep, or fear that something will happen that we won’t be able to deal with.

Thinking about these things in advance, writing them down and discussing them can help to make the decision less stressful if and when that time comes.

Becoming familiar with local in-home care services may be helpful. Some RDS members have described how they have used benefits or their own money to employ a cleaner in the home relatively soon after diagnosis, with the potential from the outset that this person could take on additional care roles if required. It is important to seek out people for whom this adaptation into additional roles would be possible. Home care services are designed to help people look after themselves and their homes, allowing them to stay independent for longer. There are lots of home care services available, depending on what kind of help is required. The kinds of services available to help include: getting in and out of bed, washing, preparing meals, cleaning, and fitting equipment to adapt the home. Examples of home care services include Home Instead and Helping Hands Home Care.

Some local charities provide befriending services which can help provide additional support to people, wherever they are living. Local services can be identified on the Alzheimer’s Society website.

There are organisations, for example Share and Care , that match up households who have a spare room with someone willing to provide companionship and support– usually in return for a reduced rent or an agreement to contribute to domestic tasks around the house.

Day centres can provide an additional level of support, by way of practical assistance, the opportunity to socialise and access activities including singing and music, quizzes, gentle exercise, arts and crafts and sometimes day trips. People are sometimes provided with a meal or other refreshments as well. 

In some areas, housing facilities are available which allow independent living to continue for as long as is possible and safe, with the option of ‘help on hand’ if required. This is often referred to as ‘assisted living’ or ‘extra care housing’. Read more about this here.

Some people find it helpful to have a personal assistant to provide them with support. You can find out more about personal assistants on the UKCIL website..

Residential homes provide care for people who need support with their personal care, and who are no longer able, or want to take a break from cooking, cleaning and other home management responsibilities. They are unlikely to have a nurse or medical professional on duty but will be able to call in these services in an emergency or for short term care needs. 

Nursing homes provide care for people with medical care needs and have a nurse present at all times. Some care homes offer the option to gradually increase the level of care that is provided, from residential to nursing, as symptoms progress.

As well as asking around for local recommendations, searching for care homes can be aided by the use of ‘care home finder’ search engines. There are a number available including Lottie.org and the Care Quality Commission care home finder tool. This site allows a search for care homes in England based on geographical area, with additional search filters available, such as age or diagnosis type, to assist the search for a home which is more suitable to specific needs. For people living in Wales, Scotland or Northern Ireland the following sites can provide similar services:

Wales: Care Inspectorate Wales
Scotland: Care Inspectorate
Northern Ireland: Regulation and Quality Improvement Authority

Some hospices can provide care for people living with dementia. The palliative care that hospices provide can be an appropriate type of care for several years, not only in the later stages, with an emphasis and expertise on managing and treating symptoms for people with life limiting or incurable diseases. The availability of hospice care varies from region to region and some areas have more access to this type of care than others. Most hospice care is provided in a person’s own home, but it can also be provided in a care home, as an in-patient at the hospice itself, or as a day patient visiting the hospice. Hospice teams include doctors, nurses, social workers, therapists, counsellors and trained volunteers. Hospice care is free, paid for through a combination of NHS funding and public donation. Referrals to hospices are usually made by a GP, doctor or nurse, but hospices can be contacted directly by the people who are interested in their care services. You can see a directory of where they can be found.. The RDS Direct Support team can provide information, support and factsheets to address some of the important issues to consider when seeking paid care, either in a persons own home or a residential/nursing care setting. The information in this webinar may also be of interest.

It is important that the people who are responsible for the care needs of someone living with a rare dementia understand as much as possible about the disease, and the way it affects the person living with the diagnosis. However, because rarer types of dementia are less common, care home staff may not be familiar with some of the diagnosis-specific care needs.

To address this, Rare Dementia Support is developing and collecting resources designed to improve understanding of rarer types of dementia among the public and professionals. These can be found on our learning page. Care home staff and allied health professionals may also find the short films which feature on the disease-specific pages of our website useful.

Palliative care, pain management and the end of life

Palliative care is often misunderstood as care which is only relevant at the last stages of life. In fact, palliative care is far more wide-reaching than this and is defined by the World Health Organisation as care which ‘improves the quality of life of patients and that of their families who are facing challenges associated with life threatening illness, whether physical, psychological, social, or spiritual. Improving the quality of life of caregivers is also an important aim.’

Because dementia is progressive and not currently curable , we consider it as a life-limiting or terminal illness, so palliative care can be appropriate at any stage in a person’s illness. It is not about withdrawing care– but can be about shifting the focus and purpose of care from actively treating diseases to promoting comfort and treating symptoms. Having palliative care doesn’t necessarily mean that the person is likely to die soon– some people receive palliative care for years. However, palliative care does include caring for people who are nearing the end of life. 

Palliative care can involve: 

• managing physical symptoms such as pain 
• emotional, spiritual and psychological support 
• social care, including help with things like washing, dressing or eating 
• support for the person’s family and friends 
• making plans for the future 

End-of-life care refers to the care of people and those important to them in the last months, weeks or days of life. As well as providing treatment, care and support for the person who is nearing the end of their life, it involves talking to the person’s family and friends about expectations, wishes and preferences. End-of-life care is an important part of palliative care. 

There are a range of medicines which are typically used to promote comfort at the end of life and it may be reassuring to know that the majority of people experience very similar symptoms at the end of life, regardless of whether or not they have a diagnosis of dementia. While there may be some additional needs associated with communication and behaviour for people with dementia, medical staff are very experienced in managing symptoms which are typical at the end of life and there are many resources available to ease all of these symptoms. Having a diagnosis of dementia does not necessarily mean that a person will experience a higher level of suffering than anyone else at the end of life. It is important to remember that death is a natural part of life’s journey and that that many people die peacefully and naturally without medical intervention or assistance.

Depending on the circumstances that have led up to the point at which it is apparent that the end of life is nearing, a range of different healthcare professionals may already be involved in caring for the person with dementia. It is important to try to make sure that there is good communication with and between everyone involved. It is often helpful to have one named family member or friend who represents the collective interests and concerns of the wider family and acts as a link between the person with dementia, professionals, close family and wider circles.

Spiritual care runs through every level of care we seek and provide. Being diagnosed with a life-changing and terminal illness such as dementia sometimes leads us to think about death and dying in ways we had not previously done. It can also affect the way people think about life and the way they define what is important to them. 

Our spirituality is not the same as our faith or our religion. A person’s spirituality involves everything which provides them with a sense of purpose and meaning– and includes the way we think about ourselves, the relationships we have with other people, our views and opinions, our feelings and also our beliefs. Hence, a religious belief may be one of the many things that impacts a person’s spirituality. 

For some people, a diagnosis of dementia or any other life-changing event, strengthens their beliefs and the significance they hold. For others, the questions and uncertainty that such a diagnosis or event holds can cause them to question, doubt and feel increased distress at what lies ahead. 

It is important to be aware that we may need time and support to think about matters past, present and future, which are of deep significance to us. Support for this type of thinking may come from family and friends, counsellors, our own wider reading and awareness, or through faith and community groups. Most local faith based groups will welcome questions and conversations in a supportive, non-judgemental and non-obligatory way.

Brain donation

There are various examinations (e.g. CT scans, MRIs, biopsies and lumbar punctures) which allow for some investigation of the brain while people are alive. These are often helpful in terms of diagnosis, or for monitoring change, but they are limited in that they don’t allow for access to and investigation of brain tissue at a more significant level.

Brain banks are a way in which human brain tissue is collected and made available to researchers who are working to understand more about the way dementia affects the brain. In much the same way as some people opt to donate their body to medical research after they have died, it is possible to donate our brain to dementia research. 

Ideally, brain donation needs to have been discussed and set up in advance of a person dying. The GP, care home manager (if applicable) and the funeral director also need to be aware of the plans for brain donation ahead of the time of death. This is in part because there are approximately only 4 hours from the point at which a person dies to the time at which their body needs to have been placed in the appropriate conditions for the brain cells to be viable for research. There are several centres across the UK where donated brains can be accepted.

Some people don’t feel comfortable with the idea of brain donation and do not want to consider it as an option. This is understandable and no one should be made to feel pressured into any decision other than the one that is right for them. Other people feel that brain donation provides a way of contributing to learning and understanding in a way that, although of no direct benefit to them, may help future generations of people with the disease. 

It is important to have open and honest conversations about brain donation if it is something  you want to discuss or know more about. Speak to family and friends, and with the people who are involved in providing your care, and ask whatever questions you want answers to. 

More information about brain donation is available at Queen Square Brain Bank and Brains for Dementia Research.

After someone dies

The death of someone we care for or about carries deep emotional and practical significance. Words in themselves can never do justice to this. 

In Western culture it is usually the case that formalities and funeral arrangements dominate the days following a person’s death. The busyness of these days can prove a distraction for carers, family and friends– but this is also the time in which we need to come to terms with our loss. It can be helpful to familiarise ourselves with or at least be aware of the steps we will need to make in the days immediately after the death of the person we love and have cared for. 

The death will need to be registered, any benefits and payments changed or stopped, the funeral, if one is being held, will need to be arranged, and ultimately the Will, money and property of the person who has died will need to be dealt with. Family, friends and other contacts will need to be informed about the death in time for the funeral, and a decision about where donations can be made in lieu of flowers needs to be made, if this is the wish. 

There are increasing alternatives to traditional funeral services with options for direct cremations or direct burials becoming more common.

• What to do when someone dies: step by step – GOV.UK
• The Natural Death Centre – a list of natural burial grounds
• Quaker Social Action – Down to Earth
• The Good Funeral Guide

It is helpful to have discussed wishes and preferences, and to have made enquiries with whoever is going to manage the funeral, burial or cremation ahead of time.

Apart from the practical aspects of managing the days after the person we have cared for has died, there are of course many emotional aspects which we need to come to terms with as well. It is important to allow space for our mourning and grief and to recognise that it will be ongoing, ever-changing and something we live with for the rest of our lives. Some people describe feeling as though they had already ‘lost’ various aspects of the person they have loved, albeit in a different way and over a period of time, as their dementia progressed. However, the loss that we experience at the end of someone’s life is unique, and many people describe feeling unprepared for the impact of their death. The grief we have felt for the living losses that dementia has imposed upon us along the way is very real, and important to recognise.

For many carers, the prospect of looking ahead to a life without dementia at the helm is something they may feel guilty about. The idea that they have survived while the person they love and cared for has not, and that the person they cared for had to endure all that a diagnosis of dementia forced upon them, brings with it all sorts of feelings and reactions. Finding ways to celebrate the life of the person who has died, alongside acknowledging the best attributes and memories of times together, is an important part of cherishing their memory, and beginning to ask what they might have wanted for us in the future.