Palliative care for memory disorders

Memory disorders involve loss of brain tissue or disruptions in the flow of blood to the brain, interfering with brain function. Since the brain is responsible for all mental functions, speech, movement, and vital functions, the progression of illness gradually starts to affect these areas, making it more difficult to cope with everyday activities and increasing the need for support. Memory disorders may also involve depression, anxiety, delusions, or hallucinations. Behavioural symptoms may include restlessness and aggression.

In order to provide the kind of care that best benefits the patient, and to avoid taxing experiences such as unnecessary transfers to hospital, it’s important to make an advance care plan in case the patient’s condition worsens. If the patient has previously made a living will (also called “advance decision”), it can be helpful in advance care planning. If there is no living will, and the patient is no longer able to express their wishes, a person close to the patient is included in the planning process, the principle being to serve the patient’s best interests. Treatment goals are set in cooperation, and can be used later on to assess what kinds of treatments, examinations, and treatment limitations do and do not serve these goals. If the illness is advanced and severe, goals may include keeping quality of life as good as possible and making sure that the patient is comfortable and pain-free.

As the illness progresses, it’s advisable to update the advance care plan.

If a person with a memory disorder requires round-the-clock care, and home services are no longer enough, they can apply for round-the-clock service housing. Living in this type of housing is considered equivalent to living at home.

The aim is to allow the person to live in the place that they call home until the end of life. Being in a familiar environment, with familiar nursing staff, creates a sense of safety, which is the most important thing in terms of quality of life when it comes to people with memory disorders. Sometimes those with memory disorders are unable to express themselves. In such cases, it’s staff members who know the patient who are able to work with the patient’s loved ones to best interpret the patient’s condition and wishes, and provide the support that the patient needs.

For a person with a memory disorder, changes such as transfers to the emergency department or hospital are taxing experiences, since the condition makes it harder to make sense of what is happening around them. Things such as the noise and bustle of the hospital, unfamiliar staff members, and being in a strange new situation may make the experience feel scary and distressing, causing confusion and restlessness. Even a hospital only has limited treatment options available for an elderly person with a serious illness. With good planning, it’s often possible to provide the same treatment and care in the familiar environment of the patient’s regular place of care. In situations where symptom management is more demanding, the patient’s care is supplemented with home hospital services.

As the memory disorder progresses, the loss of brain tissue gradually extends to the areas of the brain controlling appetite and swallowing. This leads to changes in the patient’s nutritional needs, appetite, and ability to eat. Swallowing problems and loss of appetite often cause the patient’s loved ones to worry about whether the patient is getting enough nutrition.

Research has shown that artificial nutrition with a feeding tube into the stomach does not benefit those with memory disorders. It doesn’t improve the patient’s nutritional status, functional capacity, or quality of life, nor does it prevent pneumonia or prolong the patient’s life expectancy. This means that as the patient’s appetite and swallowing become affected, small portions are equally good as complete nutrition. Eating and swallowing is usually easiest when assisted by nurses familiar to the patient.

In the late stages of a memory disorder, when the patient requires help with all activities and is unable to express themselves or is constantly distressed, it’s good to stop and think about what constitutes good care if the patient develops a problem such as pneumonia. Is the patient living the kind of life that they would like to keep on living? Is the aim of the treatments to prolong life, or to focus on the present day and make sure that the patient is as comfortable and content as possible, allowing for natural death in the event of acute illness? If the decision is made to prescribe antibiotics, should they be limited to those given by mouth? Research has shown that in the case of late-stage memory disorders, antibiotics given by mouth are as effective as those administered into a vein. In addition, if antibiotics are given into a vein, patients with memory disorders may require restraints, such as having their hands tied, which is not a part of good care.

Pneumonia can be seen as a natural occurrence in the late stages of a memory disorder. Even despite starting antibiotics, pneumonia often recurs or leads to death.

Those with memory disorders are often elderly and have multiple chronic illnesses. It’s common for their condition and symptoms to fluctuate. If the patient’s condition worsens, it may be difficult to predict whether the situation will result in death even if the acute problem is treated, or whether the patient will recover. On the other hand, there’s no need to be able to make such a prediction: whatever the case, the most important thing is to make sure that the patient is content and comfortable while receiving treatment. The patient’s symptoms are medicated based on the symptoms, not on the prognosis. Time will tell whether the patient has the strength to recover.

In the case of memory disorders, death can arrive suddenly due to an acute illness, or after a slow deterioration in the patient’s condition. When death is near, and the patient is receiving hospice care, the most important thing is to provide good, loving care, treating pain and other symptoms, and making the patient feel safe. At this stage of life, nursing homes can provide the patient with all the medications they require, with assistance from home hospital services in more challenging situations. When a person with a memory disorder is receiving hospice care, taking family and friends into consideration is an essential part of care.

The patient and their loved ones often have a lot of shared history. It’s sometimes difficult to accept the progressive nature of memory disorders, the finite nature of life, and the fact that death is going to arrive at some point. During difficult moments, it’s important to talk to those participating in the patient’s care and discuss the aims of treatment together: what kinds of treatment methods, and what other things, make the patient feel as comfortable and symptom-free as possible? For a person with a memory disorder, the important thing is to make sure that today is a good day – that is enough.