10/10/2024

Dementia Carers Support – getting to know the facts – and helping.

Research shows there are more than 944,000 people in the UK who have dementia. 1 in 11 people over the age of 65 have dementia in the UK. (Dementia is the second leading cause of death in Australia, and the leading cause of death for Australian women. This is seldom talked about and is a discomforting topic for many.) The number of people with dementia is increasing because people are living longer. 1 in 3 people born in the UK today will be diagnosed with dementia in their lifetime.

Dementia is not a disease itself. The word ‘dementia’ is an umbrella term for symptoms such as memory loss, confusion and personality change. Dementia is caused by diseases of the brain. Alzheimer’s disease is the most common but other causes include vascular dementia, dementia with Lewy bodies and frontotemporal dementia. Dementia is not an inevitable part of ageing.

Many key research findings have been thanks to families with risk genes taking part in research. The discovery of rare genetic faults or ‘mutations’ that cause Alzheimer’s and frontotemporal dementia have revolutionised our understanding of these diseases. This includes identifying key molecular processes involved in the diseases that cause dementia. 

Symptoms of mild cognitive impairment

Some people have a condition called mild cognitive impairment (MCI), which can be an early sign of dementia. However, not everyone with MCI will develop dementia.

People with MCI can still take care of themselves and perform their normal activities. MCI memory problems may include:

•    Losing things often

•    Forgetting to go to events or appointments

•    Problems communicating because of difficulty finding words.

These out-of-character behaviours can occur because the person has a need that isn't being met and they cannot communicate it. For example, they might be thirsty, hungry or in pain, they may have misunderstood something and feel threatened or they may be frustrated or bored. 

 

All too many people nowadays live alone and thus might have symptoms no one sees as dementia takes its toll.

In 2023, approximately 8.38 million people lived alone in the United Kingdom, an increase of around 34,000 above the previous year when around 8.35 million people were estimated to be living by themselves. Currently, 30% of households in England were single person, 32% in Wales, and 31% in Northern Ireland.

A person with incipient dementia might use:

•    Practical strategies – setting up reminders or prompts, preparing advanced decisions or a lasting power of attorney for the future  

•    Social strategies – relying on family help, seeking spiritual support, joining new activity groups

•    Emotional strategies – using humour, focusing on short-term pleasure or living for the moment, focusing on positive aspects 

•    Health improvement strategies – exercising more, adopting a healthier diet, cutting down on alcohol and smoking.

The way a person reacts to dementia will depend on their personality, their previous experiences, their understanding of dementia, the social and emotional support they receive, and their environment. People may adopt different coping strategies at different times. 

Some people may not acknowledge that they have dementia. They may deny that they are experiencing difficulties. Others may be aware that things are becoming harder but feel that is a normal part of ageing rather than part of dementia. 

When a person is diagnosed with dementia they may not understand or accept their diagnosis. This may be because the person is in denial, or because they have what is known as ‘lack of insight’.

A person's sense of identity – who they think of themselves as – is shaped by many things, including their relationships, roles in the family and community, hobbies and occupation. 

For example, a person may identify themselves as a keen gardener. 

Changes caused by dementia may lead to changes in their sense of identity. It is important that family, friends and carers are aware of this because they are able to influence how a person with dementia sees themselves. They should try to treat the person with dementia as an individual rather than defining them by the condition or focusing on negative aspects such as lost abilities. 

Carers can help by supporting existing relationships and encouraging the person with dementia to join social groups. However, some refuse to accept help – or even use a wheelchair - as they pretend they are as they were, self-sufficient.

To convince a patient that they do have a problem, carers may need to prove their inability to make a cup of tea or walk unaided with a “Go on. Here is a kettle, mug and tea bag. Do try.” “No? No problem. On we go together.”

Signs of Mild Dementia

With mild dementia, a person may seem healthy but has more and more trouble making sense of the world around them. The realization that something is wrong often comes gradually to the person and their family. 

Problems can include:

•    Memory loss that disrupts daily life

•    Poor judgment, leading to bad decisions

•    Loss of spontaneity and sense of initiative

•    Losing track of dates or knowing current location

•    Taking longer to complete normal daily tasks

•    Repeating questions or forgetting recently learned information

•    Trouble handling money and paying bills

•    Challenges in planning or solving problems

•    Wandering and getting lost

•    Losing things or misplacing them in odd places

•    Difficulty completing tasks such as bathing

•    Mood and personality changes

•    Increased anxiety and/or aggression

•    Inability to drive a car or travel alone on public transport.

Alzheimer’s is often diagnosed at this stage.

Signs of moderate dementia

In this stage, more intensive supervision and care become necessary. These changes and increasing needs can be difficult for many spouses and families and would benefit from support of carers. 

Symptoms may include:

•    Withdrawal from social activities

•    Inability to learn new things

•    Difficulty with language and problems with reading, writing, and working with numbers

•    Difficulty organizing thoughts and thinking logically

•    Shortened attention span

•    Problems coping with new situations

•    Changes in sleeping patterns, such as sleeping more during the day and being restless at night

•    Inability to sign own name

•    Difficulty carrying out familiar, multistep tasks, such as getting dressed or shopping.

•    Occasional problems recognizing family and friends

•    Hallucinations, delusions, and paranoia

•    Impulsive behaviour, such as undressing at inappropriate times or places, or using vulgar language

•    Inappropriate emotional outbursts when well-educated and civilized folk use crude words and become violent.  

•    Restlessness, agitation, anxiety, tearfulness, wandering — especially in the late afternoon or evening

•    Repetitive statements or movement, occasional muscle twitches

•    Constant repletion of “I want to go home” as their current situation feels alien.

•    Inability to cook or even make a cup of tea or coffee.

•    ask the same question repeatedly. EG, “what day is it?” “When are we eating?” 

•    Diminished physical fitness increases their reluctance to take a walk – even with a hand being held by their carer

Signs of severe dementia

People with severe dementia cannot communicate and are completely dependent on others for their care. Near the end of life, the person may be in bed most or all of the time as their body shuts down. Added to the above lists of symptoms, there is often:

•    Inability to communicate

•    Forget names of family and close friends

•    No awareness of recent experiences or surroundings

•    Weight loss with little interest in eating

•    Seizures

•    General physical decline, including dental, skin, and foot problems 

•    Difficulty swallowing

•    Groaning, moaning, or grunting

•    Increased sleeping

•    Loss of bowel and bladder control.

•    Inability to read or follow the plot on a TV film  - as previous scenes are forgotten. Andre Dieu concerts are appreciated as they have no plot to follow. Two films she, a 91-year-old, has seen scores of time – such as ‘Gone with the wind’ and ‘The sound of music’ – also help pass her time enjoyably.

•     Second childhood traits: like wanting to stay with the carer, even if he or she is on the lavatory, needing to be dressed, washed, and dressed.

NOTES

Dementia can release previously controlled and blocked racism.

Hearing may not be impaired. So, vital to take care not to discuss any problems in the patient’s room!

The arrival of a carer – when it is associated in the mind of the dementia patient with the primary carer departing to work outside the home – can trigger violent and aggressive behaviour towards the newly arrived carer.

I have seen how the great-actor son of the 91-year-old dementia sufferer I am looking after was able to convince his mother  - time and again - that she had met and enjoyed the company of her new black carer, and as the mother could not remember but accepted his artistic performance, she settled down and peace was restored.(This has reminded me how ‘good Christians’, through many centuries, were against acting because  - not only was it a distracting waste of time – but it was tantamount to lying. A sin. However, lying is for the benefit of the speaker. Acting is for the benefit of the audience – and thus virtuous.)

A common cause of death for people with dementias is aspiration pneumonia. This type of pneumonia develops when a person cannot swallow properly and takes food or liquids into the lungs instead of air.

Coping with dementia sufferers

Concentrate on what the person feels, rather than what they remember. The person with dementia may be experiencing a world that is very different to that of the people around them. To understand and support the person, try and see things from their perspective and recognise their coping strategies. As the patient is not in our world, we must try to get into his or her world. Not easy.

Person-centred care is sensitive to the person as an individual and focuses on promoting their wellbeing and meeting their needs. It concentrates on what the person feels, rather than what they remember; and what they have rather than the abilities they have lost.

Caring for dementia sufferers is certainly never dull

For the past two years, I have been caring for  lady, soon to be 92 years old, with now severe dementia. So, I know a bit about caring for a dementia sufferer.

Thus, I have recruited Fred Mairet, director of Home Instead Westminster and Dementia Action Alliance, to help me set up and run Westminster Cathedral’s Dementia Carers Support Group.

Apart from emails and telephone conversations – and even Zoom meetings - he suggested we meet monthly. He would help our members visit museums, Lord’s Cricket Club, Tate Gallery, etc.

You can find out who I am by going to my website fathervlad.com

If you would like to know more, please send me an email to vladimirfelzmann@rcdow.org.uk

 

Prof. Msgr. Vladimir Felzmann, 

Visiting Professor, St Mary’s University, Twickenham [SMU]

a.k.a Father Vlad

Vice-President Marketing, Hydrasyst

Vaughan House

46 Francis Street

London SW1P 1QN 

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