Introduction 

Dementia is an umbrella term for a number of diseases involving neurodegeneration of the brain. It is probably most well known for affecting memory, but can also affect many other aspects of functioning including behaviour, mood and ability to carry out daily living tasks. Alzheimer's disease is the most common form of dementia, but this article will focus on the third most common type of dementia, Frontotemporal dementia (FTD). FTD involves neurodegeneration of the frontal and the anterior (towards the front) part of the temporal lobes of the brain, responsible for “higher functions” like personality, thinking and executive functioning. FTD is an incurable and life-limiting disease, with significant disability associated with the later stages. One of the clinical features of FTD is that it is more commonly an ‘early onset’ dementia, affecting people between 45-65 years old. Early-onset dementias are often more rapidly progressing than those that start later in life. 

Palliative care 

Palliative care is the term used for healthcare given to someone who is at the end of life. However, palliative care is not only for those in the late stages of their disease- palliative treatment may be applicable for those in the early stages of some terminal illnesses, to plan for the future. The aim of palliative care is to improve the quality of life as much as possible for the person during this time. Palliative care can involve medications, for example for pain relief or improving low mood. Psychological interventions, like talking therapies can help the patients as well. Where healthcare facilities are able to, they can also offer support to the families of the patient to help them during this time, or for bereavement counselling after the patient has died. Whilst palliative care can be given with the aim of prolonging life, it is not necessarily the case all the time. 

Late stage FTD

The later stages of FTD are marked by severe disability. A person will have severe memory impairments, may not be oriented in time and place, and may not recognise names or faces even of close relatives. This is a significant sign of late-stage FTD as memory is usually not affected in the early stages. Their speech may be affected to the point of being non-verbal. Their ability to carry out tasks of daily living is usually completely gone- daily living tasks include washing, dressing, toileting etc. They may not be able to take in food if their swallowing is impaired. They may also experience psychotic symptoms of delusions (fixed belief that is not true, even in the light of evidence to disprove it), or hallucinations (such as seeing or hearing things that are not actually there). Their behaviour is also often affected, they can become aggressive- both physically and verbally, and agitated, unable to relax. 

End-of-life signs 

If a person is end of life, they may be slipping in and out of consciousness and may not be responsive to their environment. They might have changes in their breathing pattern, such as slow, laboured breathing, or irregularities in the rate of breathing. They may also have other organs or systems start to fail which can cause them to deteriorate

Advanced care planning 

A person can make an advanced directive, or an advanced care plan which is a document to plan for their healthcare as per their wishes, written while they have capacity to help healthcare providers make decisions for when the person cannot decide for themselves. 

However, if there is no advance directive, the family and healthcare providers will make decisions in the best interests of the patient, respecting the wishes of the person and their family. Capacity, or the ability to make decisions for oneself, is gauged throughout the process- the person may be able to make decisions themselves about some matters, but for others, it may be joint with the family. This is known as fluctuating, or transient capacity. The wishes of the person will be taken into account, both at the time of the decision, and if they do not have capacity, what they would have wanted is considered. 

It is acknowledged that the initial diagnosis period is a difficult time as it is, and some may even view it as an insensitive suggestion to make during this time, but if an advanced care plan is to be made, it is important that the person has full capacity at the time.¹

Lasting power of attorney 

A lasting power of attorney (LPA) in healthcare, is a document to allow someone (or multiple people) nominated by the patient while they had capacity, to make healthcare decisions for them when they do not have capacity, although LPAs can be made for decisions on other matters like finances or property too. The nominated person can be a member of their immediate family. These decisions will involve the healthcare team at the time and will respect the best interests of the patient. This can involve end of life decisions like whether or not to carry out life-sustaining treatments or decisions such as whether the patient would want to die at home or in a hospital.⁵

Family and carers

Caring for someone with dementia can be an incredibly difficult time for many different reasons. Carrying out the physical care of the person can be tiring and difficult to manage. It can be very emotionally challenging, especially for those who may not have a strong support network to draw upon, leading to feeling isolated or experiencing caregiver burnout. Not just for physical care, but also for making healthcare decisions. Then after the person has died, grief can be an ongoing challenge. Having bereavement counselling can be helpful for some people, as can having counselling during the caring process, especially if the caregiver does not have anyone else to talk to. 

A person who is in the late stages may be very frail, possibly immobile, and unable to feed themselves. These can all be reasons why care at home may not be possible for a family and they may need to go into a nursing home, or have professional intervention at home. 

There is also the financial aspect of caring for someone with dementia which can also bring difficulties. Depending on the country, the level of government subsidy for healthcare will vary, and in some countries, there may not be any at all. There are often costs that the family will have to bear, such as a loss of income or adjustments within the home. 

Death

In many cases of dementia, the cause of death may not be dementia itself, but instead are admitted into hospital for another reason (whilst they have dementia), such as a cardiovascular event, pneumonia, or renal failure, which ends up being the reason for death. In such cases, the location of death is usually the hospital. In some cases, if the person with late-stage FTD did not have a good quality of life before, or is too frail and would not withstand invasive treatment, a decision to not give or withdraw life-sustaining treatment can be made, allowing the person to die without enduring further pain with little to no benefit. 

Those in the early stages of FTD usually are cared for in their own homes by their relatives. Nursing homes, especially those that are specifically for dementia patients are more common in the later stages, although many remain at home during their later stages also (especially if a nursing home is not an option). The patient may have expressed wishes of where they would prefer to die- either at their own home, or in a nursing home. In other cases, the family may choose where would be the best place for the patient. 

Summary 

Frontotemporal dementia (FTD) is a type of dementia which more commonly occurs in younger people, between the ages of 45 and 65. For many people who have dementia, their cause of death is not actually dementia, but because of another cause which dementia has made them more susceptible to. For example, if a person is unable to swallow and feed themselves, particles of food may go down into their lungs (instead of down their oesophagus) and become a cause of infection, leading to pneumonia, which can be fatal. 

In the late stages, patients can become non-verbal, have low mood and become agitated and may be unable to carry out tasks of daily living, such as washing, dressing or feeding. An advanced care plan or lasting power of attorney can help the healthcare professionals and the family of the patient to make decisions on behalf of the person when their capacity to make their own decisions is no longer there. All decisions are made in the best interests of the patient, respecting their wishes, the family’s wishes, and the knowledge of the healthcare professionals involved.