Check Their Advance Care Plan
You should find out if the person has an advance care plan. This document may record their preferences about the care theyd like to receive, including what they want to happen, what they dont want to happen and who they want to speak on their behalf. It may include an advance statement or an advance decision. We have information on planning ahead;for patients and their families, which you might find useful.
Support For Carers And Family
Coming to terms with the impending loss of someone you may have helped care for for some time is difficult and upsetting.
Talk to the healthcare professionals about your own concerns and wishes. These may include reassurance that the person’s pain is being properly managed or the need to be with them at the end of their life.
After the death of a loved one, you’ll experience bereavement in your own way. It’s important that you’re supported in this process.
Alzheimer’s Society has a useful factsheet on end of life care for people with dementia.
Page last reviewed: 13 September 2018 Next review due: 13 September 2021
Medical Interventions In Late
If someone is in the later stages of dementia and becomes seriously ill, there may be discussion about whether to actively treat their illness. Ways of intervening may include resuscitation after a heart attack, antibiotic treatment for pneumonia, or giving food or liquids by mouth.
Giving or withholding treatment is a serious decision to make for someone else and is not an easy one to make. You need to consider:
Sometimes the decision can only be made by a guardian appointed by a tribunal or court. Each state and territory has different regulations but medical staff or Dementia Australia can advise you about appropriate contacts.;
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Care In The Last Days Of Life With Dementia
We use the words dying or terminal to describe when a person is in the last few days or hours of life. Sometimes a death is sudden and unexpected. More often, though, a person shows signs that they are dying: it is important to recognise these and plan ahead. This section will help you to anticipate and manage symptoms, as well as provide some tips to help prepare family and loved ones through what is a highly emotional and uncertain time.
I dont want my mother to die alone. I want her to be comfortable and to die with dignity.
A daughter of a person with dementia.
Barriers For Good Palliative Care For People With Dementia
Despite increasing knowledge of optimal care and the recommendation for early integration of palliative care in the course of disease, accompanied by disease modifying treatment , a number of reasons for barriers of good palliative care for people with dementia were identified .
Diagnosing dementia in the early phases can be challenging and lengthy, leading to delays early access to palliative care . Dementia is often not acknowledged as terminal and life limiting disease and consequently end of life is not taken into consideration or adequately addressed . Another barrier is the difficulty in predicting the duration of the disease or its anticipated course in contrast to cancer. Although experts have determined the average length of the different stages and length of the disease, accurate individual predictions remain challenging. Notably, people with dementia have limited access to hospice and palliative care .
Regardless of all efforts there is still no consensus on palliative care in dementia . The applicability and appropriateness of palliative care for people with dementia was also one of the controversies in the development of the EAPC White Paper on optimal palliative care for dementia . There is a great need for robust study results on complex interventions at the end of life . The optimal timing to integrate palliative care or adapt care goals or simultaneous goals to modify disease and to provide comfort is still in discussion .
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Are There Any Treatments
There are treatments that can help with the symptoms of some forms of dementia for a period of time, but there are currently no treatments that slow, halt or reverse the changes in the brain caused by the diseases. There are currently no treatments specifically for vascular dementia or frontotemporal dementia.
In the case of vascular dementia, a doctor may prescribe medication to treat underlying cardiovascular risk factors like high blood pressure or diabetes. Physiotherapy, speech therapy or occupational therapy may be offered to help with speech or movement problems. Non-drug treatments such as cognitive therapies may be available and can help some people with dementia to manage their symptoms.
Alzheimer’s Society ; has more information on treatments for dementia.
Palliative Care In Advanced Dementia
- 1Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- 2Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf , Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- 3Clinical Trials Center , Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- 4Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
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Drowsiness Increased Sleep And/or Unresponsiveness
When the body is shutting down, symptoms like fatigue are common. If possible, try to plan visits and activities for times when your loved one is most alert. It is important to speak directly to them and talk as if they can hear, even if they are not responsive. Patients often lose consciousness and may lapse into a comatose state at the end of life, but most are still able to hear even after they can no longer speak. Do not attempt to shake or rouse your loved one if they are unresponsive.
What Are The Symptoms
Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.
A person with dementia will often have cognitive symptoms . They will often have problems with some of the following:
- Day-to-day;memory; difficulty recalling events that happened recently.
- Repetition; repeating the same question or conversation frequently in; a short space of time.
- Concentrating, planning or organising; difficulties making decisions, solving problems or carrying out a sequence of tasks .
- Language; difficulties following a conversation or finding the right word for something.
- Visuospatial skills – problems judging distances and seeing objects in three dimensions.
- Orientation – losing track of the day or date, or becoming confused about where they are.
Some people have other symptoms including movement problems, hallucinations or behaviour changes.
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Support Family And Loved Ones
It is vital that the persons family and loved ones are aware that the person may be in the last few days or hours of life. Share information in a gentle and sensitive manner, drawing on those staff who have the strongest relationships with the person and their family. Giving family members space to explore their feelings and concerns is a critical part of good end-of-life care.
Often, family and loved ones want to be present when the person dies. They should know that changes can happen suddenly and the person may die, for example, when they have just popped out of the room to use the bathroom.
Sometimes, family members may not want to be present at the death. Family and relatives should never feel that they should stay, but always give them the opportunity to stay and to be involved in care as they wish.
Be Aware Of Their Eating And Drinking
The person may have lost their appetite or have difficulties swallowing safely. In the last days, the person may stop eating or drinking. This can be very distressing to watch, but it is normal for people approaching the end of life.
You should offer the person food and drink for as long as it is safe and they show an interest. Its important to keep the persons mouth comfortable provide sips of fluids and keep lips moist and clean.
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Tips For Managing End
There are several different ways you can help a loved one manage their end-stage kidney failure symptoms. Perhaps the most valuable thing you can do is listen to your loved one and try as best you can to address their issues. However, if at any time you are unsure of how you can help, or if the patient is unable to communicate effectively, we recommend contacting their primary care physician.
Weeks Before Death Symptoms
Several weeks before death, your loved one may start exhibit a range of behavioral changes relating to their sleeping patterns, eating habits and sociability. They may begin to sleep more often and for longer periods. They will start to refuse foods that are difficult to eat or digest, but eventually they will refuse all solid foods. Do not try to force them to eat, as it will only bring discomfort to them. Your loved one may enjoy ice during this time, since it will keep them cool while also hydrating them.
Unfortunately, your loved one may become withdrawn, less active and less communicative. They may spend more time alone introspecting and may turn down company. Some also appear to become comatose and unresponsive, but this is a symptom of withdrawal. Your loved one can still hear you, so speak in a calm, reassuring voice while holding their hand. Children may become more talkative, even if they withdraw from other activities. Its important to let your loved one set their own pace during this time. Your loved one may also start to use metaphorical language, which could be a way of coping with death. It may also be used to allude to a task they feel they need to accomplish, such as seeking forgiveness.
Common symptoms in this period also include physical changes, such as:
- Chronic fatigue
- Swelling of the abdomen, such as edema or ascites
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Cool And/or Discolored Skin
Also known as mottling, your loved ones skin may become darker and grayish or bluish in color, especially on the underside of the body and the extremities. This is caused by decreased circulation. Although their skin may be cool to the touch, they may not actually feel cold. Blankets can be used for warmth, but avoid using electric blankets or heating pads, which can cause burns.
Importance Of Early Detection
Early diagnosis offers several direct benefits to persons with dementia, noted a study published in the National Library of Health.
It added: âFor example, detection can prompt evaluation of the patient for reversible causes of memory loss.
âWhen the course of disease is expected to be chronic and progressive, pharmacologic intervention may slow cognitive decline.
âPerhaps most importantly, early diagnosis provides time for patients and families to prepare for future care and maximises patientsâ opportunities to contribute to the care planning process.
âThus, a proactive approach to diagnosis and intervention may improve the well-being of both persons with dementia and family members involved in their care.â
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How Can I Support Someone With Dementia Towards The End Of Life
Knowing the person will make it easier to provide person-centred care that is focused on what they need and want. It can help to know about their likes, dislikes and their wishes for how they want to be cared for. If the person isnt able to tell you about themselves, speak to their family, friends or other people who know them well.
Its a good idea to find out if the person has a copy of This is me ;, a document that records information about themselves.;If you cant speak to the person, ask those close to them if they have a copy. They may have these details recorded in their care plan.
There are many ways to support someone with dementia at the end of life.
Place Of Care In The Last Phase Of Life
In developing palliative care for people with advanced dementia, it is important to consider circumstances of care such as place of care or where the person dies. The majority of people with early stage dementia live at home with family members caring for them. Approximately one third of people with dementia are cared for in nursing homes . A survey identified dementia in 68% of nursing home residents with only slightly more than half having recorded diagnosis and with more than half suffering from advanced dementia . People in the advanced stages of dementia spend most of their time in nursing homes . The likelihood of nursing home admission increases with age and severity of behavioural symptoms high burden of family carers is also associated with nursing home admission . People with migration background are less often cared for in nursing homes .
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How Might Dementia Affect People Towards The End Of Life
Dementia is progressive, which means it gets worse over time. In the last year of life, its likely to have a big impact on the persons abilities including memory, communication and everyday activities. The speed at which someone will get worse will depend on the type of dementia they have and who they are as an individual.;
The symptoms of later stage dementia include the following:
A person with later stage dementia often deteriorates slowly over many months. They gradually become more frail, and will need more help with everyday activities such as eating, dressing, washing and using the toilet. People may experience weight loss, as swallowing and chewing become more difficult.;
A person with later-stage dementia may also have symptoms that suggest they are close to death, but continue to live with these symptoms for many months. This can make it difficult for the person and their family to plan for the end of life. It also makes it difficult for those supporting them professionally.;
For more information on supporting someone with later stage dementia see Alzheimers Society factsheet, The later stages of dementia ;.
What Are The Main Types Of Dementia
Alzheimers disease is the most common cause of dementia, accounting for around 2 out of every 3 of cases in older people. Vascular dementia is another common form, while dementia with Lewy bodies and frontotemporal dementia are less common.
It is possible to have more than one type of dementia at the same time. Alzheimers is sometimes seen with vascular dementia or dementia with Lewy bodies. You might hear this called mixed dementia.
The symptoms of dementia vary depending on the disease, or diseases, causing it. You can read more about the symptoms associated with different types of dementia on the Alzheimers Society website ;.
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Conditions With Symptoms Similar To Dementia
Remember that many conditions have symptoms similar to dementia, so it is important not to assume that someone has dementia just because some of the above symptoms are present. Strokes, depression, excessive long-term alcohol consumption, infections, hormonal disorders, nutritional deficiencies and brain tumours can all cause dementia-like symptoms. Many of these conditions can be treated.
Support Their Cultural And Spiritual Needs
Its good to be aware of the persons cultural and spiritual needs and make sure these are respected and supported. You can make use of any advance care plans or documents, friends and family input and your knowledge of the person. Its important to try and meet these needs as much as possible, they are just as important as medical care.
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Watch Our Talk The Last Stage Of Alzheimers: What You Need To Know With Jasja Kotterman And Dr Liz Sampson Of University College London:
And then one day, the spell broke. She was hungry and thirsty, and drank and even ate and chewed, slowly, but with relish. And we gave her as much as we dared without causing her to choke. The doctor told us we would have many more months with her if she kept eating. It was a relief to hear this, and we had a few good daysso good that I planned to go back home, my sister made plans to head back to work, and my father planned to visit friends in France. We would keep in touch and be ready to come back as soon as things got worse again.
But worse came the following day. The doctor called saying my mother had developed a lung infection. She must have choked on something on one of the good days, some water, some food had entered her lungs and triggered a lung infection.
Increased Difficulty Controlling Pain
It is important to provide pain medications as prescribed by your loved ones health care team. Be sure to contact their doctor if the prescribed dosage does not seem effective or if side effects become troublesome. Alternative pain management methods, such as massage, music therapy and relaxation techniques, may be used in conjunction with pharmaceuticals to minimize anxiety and discomfort.
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Swelling To Feet Ankles And Hands
Various chronic illnesses contribute to edema and swelling of the feet and hands as the disease becomes unmanageable. Fluid is not effectively pumped through the kidneys to be filtered and regulated. As a person ages, the kidney function decreases naturally. A very common cause of edema in a dying person is protein malnutrition. Fluid is most evident in dependent areas that are below the heart like the ankles and feet. In bed ridden patients, the hands and hips may swell as well. The most common chronic diseases that will exhibit edema are chronic heart failure, renal failure and liver disease.