09/09/2024

Dementia Carers Support

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. The number of people with dementia is increasing because people are living longer.

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.

Dementia is not a disease in itself. Dementia is a word used to describe a group of symptoms that occur when brain cells stop working properly. It is caused by diseases. Alzheimer’s is the most common disease that causes dementia. It alone accounts for around two thirds of all dementia cases.

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. R

Signs of Mild Alzheimer’s disease

In mild Alzheimer’s, 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

Alzheimer’s is often diagnosed at this stage.

Signs of moderate Alzheimer’s disease

In this stage, more intensive supervision and care become necessary. These changes and increasing needs can be difficult for many spouses and families. 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

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

•    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  

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

•    Repetitive statements or movement, occasional muscle twitches

Signs of severe Alzheimer's disease

People with severe Alzheimer’s 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. Symptoms often include:

•    Inability to communicate

•    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.

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A common cause of death for people with Alzheimer’s 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.

While there is currently no cure for Alzheimer’s, there are medicines approved by the U.S. Food and Drug Administration that may help treat the disease. There are also changes that can be made to the home environment and daily activities to help a person manage their changes in thinking.

•    Symptoms of mild cognitive impairment

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

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.

Support should be sensitive to the person as an individual. This is called person-centred care. Support should also focus on promoting their wellbeing and meeting their needs. It's important to focus on what the person still does have, not on what they may have lost. 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. 

Coping strategies, a person with 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

Responses to dementia 

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. 

Understanding denial and lack of insight

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’.

Identity

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. 

For anyone receiving professional care, This is me is a leaflet that can be used to record details about identity.

Changes in behaviour

As their condition progresses, a person with dementia may start to behave in ways that are challenging and distressing, both for themselves and those around them. For example, a person with dementia may: 

•    become restless or agitated

•    shout out or scream 

•    become suspicious of others 

•    follow someone around 

•    ask the same question repeatedly. 

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

•    they may be frustrated or bored. 

Relationships, roles and responsibilities

Relationships form a central part of our identity. Relationships often change when someone has dementia. People with dementia can easily become isolated or avoided by those around them. They may lose contact with friends and family, who may not know how to react to them. 

As dementia progresses, some aspects of the relationship may become harder, such as the ability of a person with dementia to support those around them. However, many positive elements of the relationship (such as affection) will remain. Carers and those around the person with dementia may find it helpful to focus on these positive aspects. 

Carers can help by supporting existing relationships and encouraging the person with dementia to join social groups, community activities, religious activities or hobbies. Dementia cafés provide an opportunity to meet other people, talk about living with dementia and take part in group activities. The GP surgery, local library or council office will also have information about other social groups.