What symptoms might a person with dementia experience?

I don’t have dementia, so I can only imagine what it is like to live with dementia, every day. But as a doctor I have learned about dementia – the causes, and brain pathology, and treatments, and I’ve seen lots of patients with dementia. I am currently the Clinical Lead for the National Dementia Office, so I know that a key part of a healthcare service for people with dementia is assessing and treating symptoms.

Everyone with dementia is different. People have different values and life experiences, they have unique brains and bodies and personalities, and they have different resources available to them to help them cope with symptoms. And different types of dementia like Alzheimer’s disease and Frontotemporal Dementia and Lewy body Dementia and Korsakoff’s Dementia are, well, just different to each other. And yet, there are some symptoms and needs that are common across most people with dementia.

Symptoms and needs early after diagnosis (alias “normal life”)

For most people, there is that life-changing moment of hearing the diagnosis for the first time, and the subsequent days and weeks and months. People need a lot of support at this time, and information, but everyone copes with the diagnosis differently. The healthcare system needs to be able to support all coping mechanisms, including denial and information rejection, if that’s what the person needed to cope at the time. We don’t want to give someone too much or too little information – ideally a person with dementia should set the pace of adjusting to the diagnosis, not the healthcare system!

For many people, after the initial diagnosis phase, there can be a period of adjusting, and dealing with practical issues, and with spiritual or emotional symptoms. Why me; what will happen to me; and my partner? Or my children? As well as information needs, people need support and kindness and TIME during this period. Education and support can help people continue to live their normal life for as long as possible.

Cognitive Symptoms in Dementia

The core symptom in dementia is cognitive problems- forgetting things, struggling to remember words or names, having difficulty planning things or making decisions. We use our brain for everything we do, so cognitive problems affect every part of normal life. Initially this affects complicated tasks, like taxes and banking, and foreign travel, and making that perfect Christmas dinner for your family. Later, simpler things can be affected, like making a cup of tea, or choosing clothes, or even dressing .

Psychological Symptoms in Dementia

Many people with dementia also have psychological symptoms. Dementia causes depression, due to the chemical changes in the brain, and fear and anxiety, which can be linked to depression, but also due to having to cope with having dementia. And frustration. We doctors will wonder if that is due to certain dementia changes in the brain. A person with dementia may argue that frustration is only to be expected as your abilities decline, in a work or healthcare system or society that can’t or won’t adapt to your changing abilities. Some forms of dementia cause delusions and hallucinations – where people develop false beliefs, or abnormal perceptions, like ‘seeing things’. These can be upsetting to the person with dementia, but also these are very hard for families. Sometimes they can be hard to admit to, and some healthcare workers may not think to ask, or know how to respond.

Physical symptoms in Dementia

As if cognitive, spiritual/existential, and neuropsychological symptoms weren’t enough to deal with, for many people, as dementia progresses, there can be physical symptoms. Swallowing and appetite can be affected, leading to malnutrition and weight loss, and sometimes chest infections and difficulty breathing. The person can have falls, with injuries and fractures. In advanced dementia, people can have abnormal positioning and muscle tendons can tighten up. Wound healing can be affected, and rarely people get pressure ulcers. All of these factors can also lead to pain.

I know that the above paragraph must be very hard to read if you have dementia. It is important to remember that not everyone has physical symptoms. Some people develop dementia late in life and have died of another condition long before their dementia affects them much- we call this “dying with dementia, not from it”. Some people have dementia that only slowly gets worse, and can “live well with dementia” for a very long time. But some people have certain types of dementia, or have other health conditions, where they have physical symptoms from dementia early on, and the healthcare system needs to be able to assess and meet these symptom needs.

So what does this have to do with palliative care?

The key thing is that healthcare for people with dementia considers the person with dementia as a whole, and proactively looks for all types of symptoms, and can respond to these symptoms, and not just for the person with dementia, but also for their family. This proactive and holistic care does not cure the dementia, but it treats the symptoms of dementia, and so it is palliative care. Using the term palliative care recognises that dementia itself is still currently incurable, but dementia symptoms often can be significantly improved, even if not fully cured. Palliative care begins at the time of diagnosis, and continues right to the end of life. It includes preparing people and their families for dying. A person with dementia may experience feelings of grief and bereavement very early after diagnosis. Families can need bereavement support long before a person with dementia dies. Moving to residential care, changes in a person’s personality, or the person not being able to take part in an important family event, all can trigger grief and loss symptoms in family members.

Another big need for a person with dementia and their family is the need to plan for the future. Unfortunately, it is common for big decisions to be made at times of crisis, rather than through ongoing conversations about how dementia is affecting the person currently, and what might happen in the future, and what the person with dementia would like to happen in response. We call this Advance Care Planning, and it is a vital part of palliative care for a person with dementia.

So palliative care means a hospice, right?

Most of the time, palliative care can be provided by the team caring for the person with dementia, whether that is the GP and the primary care team, the team in a nursing home or community hospital, or a specialist dementia team. Sometimes we need the additional expertise and support from a specialist palliative care team, to make sure that we manage symptoms as best as possible. A hospice is a very small part of a specialist palliative care service.

Dementia services and palliative care services in Ireland need to work together to meet the needs of the person with dementia. This integrated dementia palliative care service will look different in different regions of Ireland, depending on what services are there already and how urban or rural the area. But it also really depends on the person’s needs – it might be almost all provided within the dementia service, or shared fairly equally, or be provided mainly within the palliative care service, especially if the person with dementia also has another disease like cancer.

The Model for Dementia Palliative Care Project aims to design the best model for dementia palliative care services for Ireland.

To learn more about this project, check out our previous blog on this page ‘The Model for Dementia Palliative Care Project- what’s going on?’.
Please have a further look around our website www.pallcare4dementia.com, and follow us on Twitter @PallC4Dementia for more information and to keep up to date with the Project.

2. Why do People with Dementia need Palliative Care?
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