Living with Dementia

[Giulia]

Dementia

15 March 2023

Key facts

Currently more than 55 million people have dementia worldwide, over 60% of whom live in low-and middle-income countries. Every year, there are nearly 10 million new cases.

Dementia results from a variety of diseases and injuries that affect the brain. Alzheimer disease is the most common form of dementia and may contribute to 60–70% of cases.

Dementia is currently the seventh leading cause of death and one of the major causes of disability and dependency among older people globally.

In 2019, dementia cost economies globally 1.3 trillion US dollars, approximately 50% of these costs are attributable to care provided by informal carers (e.g. family members and close friends), who provide on average 5 hours of care and supervision per day.

Women are disproportionately affected by dementia, both directly and indirectly. Women experience higher disability-adjusted life years and mortality due to dementia, but also provide 70% of care hours for people living with dementia.

Overview

Dementia is a term for several diseases that affect memory, thinking, and the ability to perform daily activities.

The illness gets worse over time. It mainly affects older people but not all people will get it as they age.

Things that increase the risk of developing dementia include:

- age (more common in those 65 or older)
- high blood pressure (hypertension)
- high blood sugar (diabetes)
- being overweight or obese
- smoking
- drinking too much alcohol
- being physically inactive
- being socially isolated
- depression.

Dementia is a syndrome that can be caused by a number of diseases which over time destroy nerve cells and damage the brain, typically leading to deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from the usual consequences of biological ageing. While consciousness is not affected, the impairment in cognitive function is commonly accompanied, and occasionally preceded, by changes in mood, emotional control, behaviour, or motivation.

Dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their carers, families and society at large. There is often a lack of awareness and understanding of dementia, resulting in stigmatization and barriers to diagnosis and care.

Signs and symptoms

Changes in mood and behaviour sometimes happen even before memory problems occur. Symptoms get worse over time. Eventually, most people with dementia will need others to help with daily activities.

Early signs and symptoms are:

- forgetting things or recent events
- losing or misplacing things
- getting lost when walking or driving
- being confused, even in familiar places
- losing track of time
- difficulties solving problems or making decisions
- problems following conversations or trouble finding words
- difficulties performing familiar tasks
- misjudging distances to objects visually.

Common changes in mood and behaviour include:

- feeling anxious, sad, or angry about memory loss
- personality changes
- inappropriate behaviour
- withdrawal from work or social activities
- being less interested in other people’s emotions.

Dementia affects each person in a different way, depending upon the underlying causes, other health conditions and the person’s cognitive functioning before becoming ill.

Most symptoms become worse over time, while others might disappear or only occur in the later stages of dementia. As the disease progresses, the need for help with personal care increases. People with dementia may not be able to recognize family members or friends, develop difficulties moving around, lose control over their bladder and bowls, have trouble eating and drinking and experience behaviour changes such as aggression that are distressing to the person with dementia as well as those around them.

Common forms of dementia

Dementia is caused by many different diseases or injuries that directly and indirectly damage the brain. Alzheimer disease is the most common form and may contribute to 60–70% of cases. Other forms include vascular dementia, dementia with Lewy bodies (abnormal deposits of protein inside nerve cells), and a group of diseases that contribute to frontotemporal dementia (degeneration of the frontal lobe of the brain). Dementia may also develop after a stroke or in the context of certain infections such as HIV, as a result of harmful use of alcohol, repetitive physical injuries to the brain (known as chronic traumatic encephalopathy) or nutritional deficiencies. The boundaries between different forms of dementia are indistinct and mixed forms often co-exist.

Treatment and care

There is no cure for dementia, but a lot can be done to support both people living with the illness and those who care for them.

People with dementia can take steps to maintain their quality of life and promote their well-being by:

being physically active
taking part in activities and social interactions that stimulate the brain and maintain daily function.

In addition, some medications can help manage dementia symptoms

[...]

Self-care

For those diagnosed with dementia, there are things that can help manage symptoms:

- Stay physically active.
- Eat healthily.
- Stop smoking and drinking alcohol.
- Get regular check-ups with your doctor.
- Write down everyday tasks and appointments to help you remember important things.
- Keep up your hobbies and do things that you enjoy.
- Try new ways to keep your mind active.
- Spend time with friends and family and engage in community life.

Plan ahead of time. Over time, it may be harder to make important decisions for yourself or your finances:

- Identify people you trust to support you in making decisions and help you communicate your choices.
- Create an advance plan to tell people what your choices and preferences are for care and support.
- Bring your ID with your address and emergency contacts when leaving the house.
- Reach out to family and friends for help.
- Talk to people you know about how they can help you.
- Join a local support group.

It is important to recognize that providing care and support for a person living with dementia can be challenging, impacting the carer’s own health and well-being. As someone supporting a person living with dementia, reach out to family members, friends, and professionals for help. Take regular breaks and look after yourself. Try stress management techniques such as mindfulness-based exercises and seek professional help and guidance if needed.

Risk factors and prevention

Although age is the strongest known risk factor for dementia, it is not an inevitable consequence of biological ageing. Further, dementia does not exclusively affect older people – young onset dementia (defined as the onset of symptoms before the age of 65 years) accounts for up to 9% of cases. Studies show that people can reduce their risk of cognitive decline and dementia by being physically active, not smoking, avoiding harmful use of alcohol, controlling their weight, eating a healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels. Additional risk factors include depression, social isolation, low educational attainment, cognitive inactivity and air pollution.

Human rights

Unfortunately, people living with dementia are frequently denied the basic rights and freedoms available to others. In many countries, physical and chemical restraints are used extensively in care homes for older people and in acute-care settings, even when regulations are in place to uphold the rights of people to freedom and choice.

An appropriate and supportive legislative environment based on internationally-accepted human rights standards is required to ensure the highest quality of care for people with dementia and their carers.

Quoted from The World Health Organization

[DTR1975]

Thank you for posting this Giulia. My Grandfather died of Alzheimer's disease. It was horrible watching this proud and skilled man slowly losing every ability that he had over the years. The worst part was when he forgot that his wife died. Everytime my dad and uncles told him about her death, it hit him like it was the first time. Eventually, he forgot about her altogether and stopped asking about her. Honestly I would rather see my father die of a heart attack or an aneurysm 10 years earlier than watch him suffer like that. I think he would, too. As would I.

[Zen Tzu]

Derek, I went through this with my Mother, after we lost my Father. So very sorry for all of your loss....

[Zen Tzu]

Grazie cara Giulia, for posting this. So sad to see these once vibrant, intelligent Souls who certainly once had so much to contribute to the world end up like this.... I often thought and said, that my very intelligent, witty and creative Mother had simply become trapped in her own body and mind....

[DTR1975]

Derek, I went through this with my Mother, after we lost my Father. So very sorry for all of your loss....

Thank you. Same to you.

[Giulia]

Thank you for posting this Giulia. My Grandfather died of Alzheimer's disease. It was horrible watching this proud and skilled man slowly losing every ability that he had over the years. The worst part was when he forgot that his wife died. Everytime my dad and uncles told him about her death, it hit him like it was the first time. Eventually, he forgot about her altogether and stopped asking about her. Honestly I would rather see my father die of a heart attack or an aneurysm 10 years earlier than watch him suffer like that. I think he would, too. As would I.

Thanks for your feedback, Derek. I am terribly sorry for your grandfather.I have read a bit about Alzheimer’s by temporarily taking part in Facebook Groups of relatives, and the changes in personality they complained about were really striking. Some people start hating the patient even if it is a parent and long to get rid of him or her.

On 13 May last year (exactly one year today) my 89-year old husband had only suffered from occational delirium, which had in turn caused a slight cognitive decline and short-term memory problems. Following a visit by two daughters from his first marriage on 13 May, daughters with whom he had a very complicated relationship, he had a terrible attack of delirium and was taken to hospital for 7 hours. After that experience, it became dangerous for him to leave the house and the social life he had had until 13 May ended. I have been feeling physically sick about all this since yesterday. This loss in social life determined a horrible drop in his health. He started suffering from hallucinations and around November he occasionally mistook things happening in television with real life. His delirium became chronic. However, I always talked with him untill the end. We could spend the whole night talking.

The reason why he forgot that his parents and brothers had died was because he could see them around the house. His mum in particular: she wouldn’t talk, but just smile. The psychiatrist told us never to tell him that they had died, because, even if he forgot that we had told him, this would make him feel upset. But I saw no reason to say things that were obviously untrue. I strongly felt that my mother-in-law, whom I had never met while alive, often visited our home. His father and two of his deceased brothers also appeared to be often around.

I feel my husband could have easily lived for ten more years. But delirium is a deadly disease and it is statistically known that, once it becomes chronic, one dies within 9 months. My husband only lived 7 months. This is why I feel sick today.

Anyway we had long and wonderful conversations and, when he felt panicky, I would tell him stories about his childhood and he would calm down and fall asleep.

He prayed a lot until the end and, during the summer, he had a wonderful visitation by Jesus dressed in light during a dream: Jesus told him not to worry and asked him to think about all the wonderful experiences he had had in his life. I kept reminding him about this visitation whenever I felt he needed encouragement.

My suspicion is that the 20 drops of Clonazepam he had been prescribed by all his doctors in order to feel calm eventually killed him. But at least he was calm when he transitioned. That was the only experience he had when I could not be with him.

Grazie cara Giulia, for posting this. So sad to see these once vibrant, intelligent Souls who certainly once had so much to contribute to the world end up like this.... I often thought and said, that my very intelligent, witty and creative Mother had simply become trapped in her own body and mind....

Thanks for your feedback, Diane. I am so sorry for your mum. You have been my confidant during my husband’s illness and we have talked about all this a lot. I have the impression that your mum was more reserved than my husband.

After reading an important essay that my husband wrote in the early nineties, which ties in with my pre-birth memories, during which I saw our future marriage and we were surrounded by distorting mirrors, and which also ties in with my astral travel experiences using mirrors as a gateway, I started to feel that my husband had deliberately chosen those last two years with delirium in order to explore new pathways in consciousness, while knowing he could alway come back to me after each trip. He had always researched modified and altered states of consciousness, and I felt that over the last two years he was still conducting his research using “distorting mirrors” as he said in his essay.