29 February 2020


(Reproduced from "The Alzheimer Society Of Ireland" brochure)

Understanding dementia - About this factsheet

This factsheet is for relatives of people diagnosed with dementia. It provides information about what to expect as dementia progresses to late stage. It aims to help families to understand some of the issues that can arise and to know where they can go for support and services.

How does dementia progress?

Dementia is a progressive condition and currently it cannot be cured. Each person's experience with dementia is unique, and that means it is not possible to know exactly how a person's dementia will progress, or how long they will live with dementia.

How dementia progresses is influenced by a number of things:

# the type or cause of dementia, (e.g. Alzheimer's, vascular or Lewybody);

# age when dementia develops;

# general health and well being; and

# other ill ness or health issues that may emerge.

In general, it can be useful to think about dementia as moving through stages; early, moderate and late stage dementia. For most people, there is a gradual progression through these stages and there is time to adjust to the changes that can occur.


What is late stage dementia?

Late stage dementia can also be called advanced or severe dementia. It usually means a person has had dementia for some time and so there is now significant damage to their brain. This means high levels of support and care are needed.

Symptoms of late stage dementia

During the later stages of dementia, people become increasingly frail. The damage caused to the brain means that a person with dementia can no longer do many of the things they used to do.

The following gives an outline of symptoms that may emerge. Not every person with dementia will experience all of these symptoms and usually the symptoms emerge gradually.

A person with late stage dementia may:

experience significant memory loss. They may not be able to recognise those close to them or identify everyday objects. As a result they may feel vulnerable and unsure as to what is happening. Reassurance and maintaining a calm environment is important. A person may have moments of recognition and connection and this can be an opportunity to engage. Ongoing engagement is valuable.

believe they are living in a time from their past and may ask for someone from that time. This can be an opportunity to talk about their past and people or places they knew and loved. See our factsheet on activities for ideas and tips about reminiscence and life story books.

find it difficult to communicate with speech. It is important to continue to talk to the person, tell them your news or talk about areas of interest or read from a favourite book, even if you are unsure they understand. People with dementia often continue to communicate through their expressions, body language and emotions after they loose their speech.

gradually lose the ability to walk and move. Falls can be common. Families need support to help a person to move without injury, particularly if a person becomes confined to a bed or a chair. There are strategies and equipment that can help, an occupational therapist or physiotherapist can advise.

need help and encouragement eating and drinking. Supporting a person to eat foods they want and enjoy can help. Small regular snacks may be better than set meals. However, eventually, chewing and swallowing can become more difficult as the muscles and reflexes are not working as they should. This can cause a person to choke or develop chest infections. Food textures may need to be changed and drinks thickened. A referral to a speech therapist or a dietician for advice is important.

become incontinent. A person may loose control of their bladder and their bowel. It is important to get support from your doctor and / or public health nurse to get advice about continence aids and how to prevent and manage infection.

doze regularly during the day and eventually may seem to be asleep more than they are awake. This is common during late stage dementia and can be difficult for families to adjust to. Talk to your doctor or nurse if you have any concerns about prolonged sleeping.


A person with late stage dementia may:

behave in ways that seem unusual. This can include periods of restlessness and agitation and repetitive movements. They may also experience hallucinations where the person believes they see, hear, feel or taste things that are not there. It is important to talk to your doctor or nurse about changes in behavior and how best to provide support.

Changes in behaviour can be a form of communication. They could be a response to pain or discomfort. Mouth and dental care and undiagnosed infection such as a urinary tract infection can be areas that need to be checked. If a person has a painful condition such as arthritis they may need a review so their pain can be assessed and managed. Sometimes simple steps like changing position and massage can be effective.

It is important to know that while this is a very difficult part of dementia and is a signal that the person is moving into the final part of their life, a person with late stage dementia can know that they are loved and cared for. A smile, a caring touch, music or hearing a kind voice can ensure they feel safe and comfortable.

Family and friends often have important knowledge of a person's life, their preferences and their wishes. Sharing this knowledge with those who are providing care can lead to good care and a quality of life throughout the journey with dementia.

Family members, particularly those who are caring for the person with dementia, will need help and support. This help can come from family, friends, health and social care professionals and services.


For more information about tips and strategies to support a person with late stage dementia and to find out about who you can talk to about accessing supports and services:

speak with your doctor or nurse

call 1800 341 341

visit www.alzheimer.ie


Caring during the final stages of dementia

As dementia moves into the final stage, it can be difficult to know how to meet your loved ones needs and spend time with them. It is important to know that people's emotional memory can remain present even during late stage dementia. This allows people to enjoy interactions with people and sensory experiences, particularly those that relate to things they previously enjoyed.

The following suggestions may support you to continue to spend time with your relative during this stage of dementia.

 Adapt your communication style.

90% of all communication takes place through non¬verbal communication such as gestures, touch and facial expressions. People with advanced dementia, who have lost their ability to verbally communicate, can still often interpret and express themselves through these avenues of communication. Similarly, hearing the voices and laughter from family and friends allows a person to be in familiar company and share conversations with the most important people in their lives.

Tailor the environment to the interests or preferences of the person. This can allow the person to emotionally and positively relate to things that they previously enjoyed. Whether it is the smell of their favorite flowers, the feel of satin sheets, their favorite radio programme or a crisp breeze, these experiences can capture the individuality of the person, evoke pleasant memories and provide comfort and assurance to the person.

Simply being present with the person.

This allows for human connection which can be hugely rewarding and reduce the person's feelings of isolation. However, if sitting in silence feels awkward, introducing music or reading aloud a favorite book or both of you just holding a significant object (i.e. wedding ring or seashell from a recent holiday) can help to put a focus to the time you spend with the person.