How Can I Support Someone As Their Dementia Progresses
In the later-stages of dementia the person may become increasingly dependent on others for their care.
They may have severe memory loss at this stage and fail to recognise those close to them. They may lose weight , lose their ability to walk, become incontinent, and behave in unusual ways.
Not everyone will show all these signs, and some people may show them earlier on in the illness.
Risk Factors With Dementia
There are different personal risk factors that cause people to fall, however, people with dementia are at greater risk because they:
- are more likely to experience problems with mobility, balance and muscle weakness
- can have difficulties with their memory and finding their way around
- can have difficulties processing what they see and reacting to situations
- may take medicines that make them drowsy, dizzy or lower their blood pressure
- are at greater risk of feeling depressed
- may find it difficult to communicate their worries, needs or feelings
Each person will experience dementia in their own way, and may experience all or none of these risk factors.
Changed Sexual Behaviours In Dementia
It is important to remember that any strange or uncharacteristic behaviour is part of the illness and not directed in a personal way. The person with dementia may no longer know what to do with their sexual desire, or when or where to appropriately express their desire.
Some of the changes in sexual behaviours in people with dementia can include:
- increased sexual demands can result in unreasonable and exhausting demands, often at odd times or in inappropriate places, and aggression if those needs are not met
- loss of sexual inhibitions can result in sexual advances towards others, undressing or fondling themselves in public, or mistaking another person for their partner
- diminished sexual interest can result in the person becoming withdrawn or they might accept physical contact from others, but not initiate affection.
Social And Economic Impact
Dementia has significant social and economic implications in terms of direct medical and social care costs, and the costs of informal care. In 2015, the total global societal cost of dementia was estimated to be US$ 818 billion, equivalent to 1.1% of global gross domestic product . The total cost as a proportion of GDP varied from 0.2% in low- and middle-income countries to 1.4% in high-income countries.
Trouble Learning New Things
If your loved one is diagnosed with dementia , one of the effects is trouble/difficulty learning new things and solving problems.
It becomes very evident that even if you repeat them what to do several times, not only do they not show interest in it, they are struggling, too.
Offer a helping hand and together solve the task.
The last thing you would want to do is to start screaming and yelling at them.
Unfortunately, this is part of the progression of dementia. Instead, you should introduce all sorts of different dementia activities which will help keep their brain active.
Said that, keep them engaged in various exercises as often as possible for as long as possible. This will slow down the process of dementia, worsening their well-being.
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Be Aware Of Their Eating And Drinking
The person may have lost their appetite or have difficulties swallowing safely. In the last days, the person may stop eating or drinking. This can be very distressing to watch, but it is normal for people approaching the end of life.
You should offer the person food and drink for as long as it is safe and they show an interest. Its important to keep the persons mouth comfortable provide sips of fluids and keep lips moist and clean.
Dementia & Alzheimer’s Disease
After getting a positive dementia diagnosis, you may be wondering how does dementia affect you physically.
While the illness is mostly associated with memory and mental issues, the symptoms can physical as well.
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How Does Dementia Affect Communication
- difficulty remembering events or situations
- difficulty acquiring or remembering recently received information
- difficulty finding words
- limited ideas or use of words in conversation
- taking longer to process information
- being easily distracted
- difficulty forming or understanding complex sentences
- filling in gaps in memory or understanding
- take a long time to respond, e.g. providing an answer to a question asked some time ago
- weakness of voice or difficulty articulating
- difficulty planning or making decisions
- lack of inhibition
- inability to read facial expression or complex social cues
General Care And Support
If you care for or know someone who is living with dementia, it can make you feel frustrated and helpless. Its important to have people around who take time to build empathy and trust, and help provide a safe and predictable environment. Your emotional and physical support will be a great help to the person when the world seems confusing and hostile.
In some cases, its helpful to make changes to a persons home environment to help them feel less disoriented . Visit Health Victorias website for some ideas on creating ‘dementia-friendly environments’.
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Loss Of Mental Ability
Memory problems are usually the most obvious symptom in people with dementia. Forgetfulness is common. As a rule, the most recent events are the first forgotten. For example, a person with early stages of dementia might go to the shops and then cannot remember what they wanted. It is also common to misplace objects.
Early memories stay longest. Events of the past are often remembered well until the dementia is severe. Many people with dementia can talk about their childhood and early life. As dementia progresses, sometimes memory loss for recent events is severe and the person may appear to be living in the past. They may think of themself as young and not recognise their true age.
Someone with dementia may not know common facts when questioned . They may have difficulty remembering names or finding words. They may appear to be asking questions all the time.
Language problems can also develop. For example, someone with dementia may have difficulty understanding what is said to them or understanding written information. Problems with attention and concentration can also occur. It is common for someone with dementia not to be able to settle to anything and this can make them appear restless.
Symptoms Specific To Vascular Dementia
Vascular dementia is the second most common cause of dementia, after Alzheimer’s. Some people have both vascular dementia and Alzheimer’s disease, often called “mixed dementia”.
Symptoms of vascular dementia are similar to Alzheimer’s disease, although memory loss may not be as obvious in the early stages.
Symptoms can sometimes develop suddenly and quickly get worse, but they can also develop gradually over many months or years.
Specific symptoms can include:
- stroke-like symptoms: including muscle weakness or temporary paralysis on one side of the body
- movement problems difficulty walking or a change in the way a person walks
- thinking problems having difficulty with attention, planning and reasoning
- mood changes depression and a tendency to become more emotional
Read more about vascular dementia.
Symptoms In The Later Stages Of Dementia
As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages, the person is likely to neglect their own health, and require constant care and attention.
The most common symptoms of advanced dementia include:
- memory problems people may not recognise close family and friends, or remember where they live or where they are
- communication problems some people may eventually lose the ability to speak altogether. Using non-verbal means of communication, such as facial expressions, touch and gestures, can help
- mobility problems many people become less able to move about unaided. Some may eventually become unable to walk and require a wheelchair or be confined to bed
- behavioural problems a significant number of people will develop what are known as “behavioural and psychological symptoms of dementia”. These may include increased agitation, depressive symptoms, anxiety, wandering, aggression, or sometimes hallucinations
- bladder incontinence is common in the later stages of dementia, and some people will also experience bowel incontinence
- appetite and weight loss problems are both common in advanced dementia. Many people have trouble eating or swallowing, and this can lead to choking, chest infections and other problems. Alzheimer’s Society has a useful factsheet on eating and drinking
Dementia Vs Alzheimers Disease
Dementia and Alzheimers disease are not the same. Dementia is an umbrella term used to describe a collection of symptoms related to memory, language, and decision-making.
AD is the most common type of dementia. It causes difficulty with short-term memory, depression, disorientation, behavioral changes, and more.
Dementia causes symptoms such as forgetfulness or memory impairment, loss of sense of direction, confusion, and difficulty with personal care. The exact constellation of symptoms will depend on the type of dementia you have.
AD can also cause these symptoms, but other symptoms of AD may include depression, impaired judgment, and difficulty speaking.
Likewise, treatments for dementia depend on the type you have. However, AD treatments often overlap with other non-pharmacological dementia treatments.
In the case of some types of dementia, treating the underlying cause may be helpful in reducing or stopping the memory and behavior problems. However, that is not the case with AD.
Its absolutely normal to forget things once in a while. Memory loss by itself does not mean you have dementia. There is a difference between occasional forgetfulness and forgetfulness that is cause for serious concern.
Potential red flags for dementia include:
- forgetting who someone is
- forgetting how to do common tasks, such as how to use the telephone or find your way home
- inability to comprehend or retain information that has been clearly provided
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How Common Is Dementia
Research shows there are more than 850,000 people in the UK who have dementia. One in 14 people over the age of 65 have dementia, and the condition affects 1 in 6 people over 80.
The number of people with dementia is increasing because people are living longer. It is estimated that by 2025, the number of people with dementia in the UK will be more than 1 million.
What Are The Signs That Someone With Dementia Is Dying
It is difficult to know when a person with dementia is coming to the end of their life. However, there are some symptoms that may indicate the person is at the end of their life including:
- limited speech
- needing help with everyday activities
- eating less and swallowing difficulties
- incontinence and becoming bed bound.
When these are combined with frailty, recurrent infections and/or pressure ulcers, the person is likely to be nearing the end of their life. If the person has another life limiting condition , their condition is likely to worsen in a more predictable way.
When a person gets to within a few days or hours of dying, further changes are common. These include:
- deteriorating more quickly
- irregular breathing
- cold hands and feet.
These are part of the dying process, and its important to be aware of them so that you can help family and friends understand what is happening.
When a person with dementia is at the end of life its important to support the person to be as comfortable as possible until they die
For more information, see our page, Signs that someone is in their last days or hours.
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Supporting Someone With Dementia Who Has Mental Health Problems
Its common for people with dementia to experience depression, anxiety or apathy . Alzheimers UK has information about how these problems might affect someone with dementia, and ways to support them and get them the right support and treatment.
Improving the mental health of someone with dementia can improve their overall quality of life, for example by helping them engage with friends and relatives, improving their appetite and sleep quality, and boosting their motivation.
Planning For The Future
- Talk to the person with dementia to make sure that they have a current up-to-date will that reflects their wishes.
- Encourage the person with dementia to set up a Lasting Power of Attorney so that a responsible person can make decisions on their behalf when they are no longer able to.
- Talk to the person with dementia about making an advance decision to refuse certain types of medical treatment in certain situations. It will only be used when the person with dementia has lost the capacity to make or communicate the decision in the future.
- If the person youre caring for has already lost the ability to make or communicate decisions but doesnt have an LPA, you can apply to the Court of Protection who can make decisions on behalf of that person or appoint someone else to do so.
If the person you care for drives, the law requires them to tell DVLA about their diagnosis. A diagnosis of dementia doesn’t automatically mean someone has to stop driving straight away – what matters is that they can drive safely. Talking to the person you care for about stopping driving can be very sensitive.
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When Should I Speak To A Doctor About Dementia
See your doctor for a full examination if you notice several of these signs:
Its important not to assume someone has dementia based on these symptoms alone. Other treatable conditions such as depression, infections, hormone imbalances and nutritional deficiencies can also cause dementia-like symptoms.
Symptoms Specific To Frontotemporal Dementia
Although Alzheimer’s disease is still the most common type of dementia in people under 65, a higher percentage of people in this age group may develop frontotemporal dementia than older people. Most cases are diagnosed in people aged 45-65.
Early symptoms of frontotemporal dementia may include:
- personality changes reduced sensitivity to others’ feelings, making people seem cold and unfeeling
- lack of social awareness making inappropriate jokes or showing a lack of tact, though some people may become very withdrawn and apathetic
- language problems difficulty finding the right words or understanding them
- becoming obsessive such as developing fads for unusual foods, overeating and drinking
Read more about frontotemporal dementia.
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Support For People With Dementia And Carers
UCL covid-19 decision aid – a tool to support carers of people living with dementia to make difficult decisions during covid-19
Alzheimers Society end of life care information for patients and families
Alzheimers Society information and fact sheets on all aspects of dementia including what is dementia, types of dementia and living well with dementia
Alzheimer Scotland specialist services for patients and carers
Dementia UK expert one-on-one advice and support to families living with dementia via Admiral Nurses
Referral To A Specialist
Referral for the opinion of a specialist is usually needed to confirm the diagnosis of dementia. This is usually to one of the following:
- A specialist memory clinic.
- A psychiatrist specialised in looking after older people.
- A specialist in the care of elderly people.
- A neurologist.
The specialist may be able to determine the likely cause of dementia and decide if any specific treatment may be helpful . To help with this, they may suggest further investigations such as a magnetic resonance imaging scan of the brain.
Other more sophisticated tests may be done if an unusual cause of dementia is suspected.
Usually referral is made to a specialist team as early as possible. This is partly so the person developing dementia and their carers can obtain advice about advance planning. In the earlier stages, people are better able to make decisions about how they wish to be cared for. They are also better able to decide who they want to manage their affairs once they become unable to do so themselves.
Special memory clinics give lots of information on dementia and how to manage it. Sometimes before dementia is established, there is an earlier phase called mild cognitive impairment. People with mild memory symptoms are often referred to the specialist clinics, so that they can have information early. This is in case their symptoms get worse and develop into dementia.
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Annual Report To Parliament On Canada’s Dementia Strategy
Each year the federal Minister of Health prepares a report to Parliament on the national dementia strategy.
The 2020 Report to Parliament shares a Canada-wide overview of some of the many dementia-related efforts underway across the country. This report highlights how many different organizations, including the federal government, are supporting the strategy’s national objectives and reflects the variety of those efforts.
For All Family Members
Some of the most common feelings families and caregivers experience are guilt, grief and loss, and anger. Rest assured that you are not alone if you find yourself feeling these, too.
It is quite common to feel guiltyâguilty for the way the person with dementia was treated in the past, guilty at feeling embarrassed by their odd behaviour, guilty for lost tempers or guilty for not wanting the responsibility of caring for a person with dementia.
If the person with dementia goes into hospital or residential care you may feel guilty that you have not kept him at home for longer, even though everything that could be done has been done. It is common to feel guilty about past promises such as âIâll always look after you,â when this cannot be met.
Grief and loss
Grief is a response to loss. If someone close develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship. People caring for partners may experience grief at the loss of the future that they had planned to share together.
Grief is a very individual feeling and people will feel grief differently at different times. It will not always become easier with the passing of time.
It is natural to feel frustrated and angryâangry at having to be a caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for her difficult behaviours and angry at support services.
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