Advanced Stages of Dementia

What are the 7 stages of dementia?

Dementia describes different brain disorders that trigger a loss of brain function. These conditions are all usually progressive and worsen over time. Alzheimer’s disease is the most common type of dementia, affecting between 50 -75% of those diagnosed. Other types of dementia include vascular dementia affecting up to 20% of those diagnosed, frontotemporal dementia affecting 2%and dementia with Lewy bodies between 10-15%.

Whilst everyone’s dementia journey is unique, a typical journey can be characterised by 7 different stages of dementia ranging from mild (early-stage dementia), moderate (mid-stage dementia) and severe (late stage or advanced dementia). At each stage the condition presents different symptoms and with that, challenges for the person and their families.

By defining the 7 key stages it allows healthcare professionals and professional and family carers to adapt to the persons changing needs. It then allows for a responsive and personalised plan of care and support to be delivered to the person living with dementia. It also provides a framework for planning the progression of the journey, so everyone knows how to respond effectively and efficiently.

Here we explore the 7 stages of dementia, the symptoms it presents for the person living with dementia and how families can care and support their loved one at each stage of the journey. This means that a person living with dementia can live well with a good quality of life.

How is each stage of dementia determined?

It is important to get a dementia diagnosis as soon as possible, if you feel your loved one is experiencing any of the challenges the condition presents. This enables the person and their families to adapt and put in place the right programme of care and support.

There is no single test that can determine whether you have dementia or not. A diagnosis will be based on a range of medical tests and your medical history. If your loved one is exhibiting symptoms of dementia you should contact your GP for an assessment in the first instance. It is worth remembering that not all confusion and memory loss means your loved one has dementia. It is important to rule out other health conditions that may the cause of the symptoms, including a urinary tract infection (UTI) or thyroid problems. A GP will be able to rule out other physical causes for the problems your loved one might be experiencing.

The GP will wish to ascertain whether your loved one is having any problems with concentration, memory, reasoning and spatial awareness. Depending on the outcome of the GPs assessment, he may refer your loved one to a specialist memory clinic to an assessment team or a dementia specialist to understand if there is some sort of cognitive impairment.

When you attend a memory clinic the specialist will talk to you about your concerns. They will be seeking to better understand your loved one’s experiences. The experts will listen to your concerns so they can build up an accurate picture of what has been happening. Your loved one will then undergo a series of cognitive assessments and brain scans to better understand the dementia timeline for your loved one and what stage of dementia they are at.

Memory test

Following an initial consultation, it is likely you will then meet with a neuropsychologist with your loved one. They will get a deeper understanding as to your loved one’s current cognitive function and memory. The first stage is to conduct a Neuropsychology Assessment or ‘memory clinic test’ as it is more commonly known.

This assessment will determine how well each part of the brain (known as lobes) are functioning. The test is focused on understanding recall and short-term memory. Both are impacted if someone is living with dementia.  If a person struggles to complete the memory test successfully, this may indicate damage to the frontal lobe or temporal lobe in the brain. The frontal lobe covers thinking, planning and problem solving. The temporal lobe is responsible for memory.

The neuropsychologist will initially conduct a general screening of your loved one’s brain. Many neurologists use the Addenbrooke’s Cognitive Examination (third edition). This tests attention, orientation, memory, language, visual perceptual and visuospatial skills. It is useful in the detection of cognitive impairment. It is especially helpful in the detection of Alzheimer’s disease and frontal-temporal dementia. Depending on the outputs of this test, the neuropsychologist will undertake more detailed testing of areas of concern.

MRI brain scan

The memory clinic may then organise for an MRI scan of the brain. This will enable them to understand whether there is damage and to what part of the brain. The MRI will give information on the brain’s blood supply. This will determine if any blood vessels are affected which are impacting memory. It will also identify any brain swelling or a tumour.

Consultation

Once the neuropsychologist has the results of the MRI scan, they will discuss with you and your family the diagnosis and outline next steps in terms of treatment and any support you require.

It may be that you are asked to return to the memory clinic in a few months’ time so further tests can be done to see how your condition has progressed.

DEMENTIA LIFE EXPECTANCY

As everyone’s experience of dementia is different, so is the rate at which it progresses. The type of dementia will also impact life expectancy. Dementia is a progressive disease, and sadly for all those living with the condition symptoms will worsen over time. The Alzheimer’s Society publish average life expectancy figures for the most common types of dementia:

Alzheimer’s disease – 8-10 years, although shorter for those diagnosed in their 80’s or 90’s where other health conditions are likely to be prevalent. Some live for 15 years or longer

Vascular dementia – around 5 years. A person with vascular dementia is more likely to pass away from a stroke or heart attack than dementia.

Dementia with Lewy bodies – around 6 years. The physical symptoms of this type of dementia increase the risk of falls and infections.

Frontotemporal dementia – about 6-8 years depending on other health conditions the person is living with.

Advanced-symptoms-of-dementia

What are the stages of dementia and how long do they last?

The symptoms of dementia occur in 7 stages and are characterised by the cognitive decline a person will experience at each stage:

  • Stage 1 – no cognitive decline
  • Stage 2 – very mild cognitive decline
  • Stage 3 – mild cognitive decline
  • Stage 4 – moderate cognitive decline
  • Stage 5 – moderate / severe cognitive decline
  • Stage 6 – severe cognitive decline
  • Stage 7 – severe cognitive decline

Stages 1-3 – Mild dementia

The first stage of dementia may happen months or a year or more before any symptoms present in a person. During this time a person may not know that dementia is developing. A person will be generally well, living with levels of independence and maintaining their lifestyle.

As the person transitions through mild dementia stages, they may start to show some symptoms:

  • Problems with memory – for example, not knowing where they put their keys or glasses
  • Communication problems – struggling to find the right words, or getting lost in sentences
  • Issues with planning and organisation
  • Concentration issues – getting distracted from day-to-day tasks and routines
  • Changes in mood and personality – may display a lack of motivation for everyday life
  • Loosing track of place and time

This stage of dementia is often referred to as early-stage dementia and can last on average 2-4 years.

Stages 4-5 – Moderate dementia

During the second stages of dementia symptoms are classed as moderate or mild dementia. Whilst moderate they can be very clear to everyone and the person living with dementia is likely to be losing independence and may be struggling with tasks of daily life.

Memory issues are more severe during this stage and a person can become confused about who they are or where they are.

Communication becomes even more challenging with incidences of forgetfulness and/or finding the right words increasing. Judgement is impacted at this stage and a person may not take as much care of themselves, with personal hygiene standards not being maintained. Incontinence is also very common during this stage.

The most significant change at this stage is the impact on a person’s mood and behaviour. Difficulties with sleeping, frustration resulting for some in aggressive behaviour, repeating actions or words and wandering are all common behaviours at this stage.

This stage of dementia is commonly referred to as mid-stage dementia.  This is generally the longest stage in a person’s dementia journey lasting between 2 to 10 years.

Stages 6-7 – Severe dementia

This stage is typically referred to as late-stage dementia or advanced dementia. It is characterised by severs decline in cognitive and physical function.

People in the advanced stages of dementia become increasingly frail and depend more on other people for support. As dementia progresses it causes changes to the person’s brain, they may struggle to do many of the things they used to. However, even in the advanced stages the person may experience moments of lucidity (being aware of their situation) and they are always aware of how they are feeling, even if they do not quite know what made them feel that way.

The person’s reactions are likely to be influenced by their environment and how they feel. For example, they may react more positively if they are in a familiar environment or one where they feel comfortable. Communication becomes increasing challenging and some people during this stage are not able to verbalise at all. It is likely at this stage a person will require higher levels of care and support to complete day-to-day tasks, like eating and personal care. At stage 7 it is likely that a person living with dementia will be spending most of their time in their bed.

This stage of dementia is the shortest in a person’s journey, typically lasting no longer than 3 years.

What type of care options are available for dementia?

Here we explain the benefits and limitations of the options available to you.

BENEFITS

LIVE-IN CARE

  • One-to-one care, tailored to you. This is the best care for all 7 stages of dementia as the carer deeply knows you and how to respond to changing needs
  • Stay in the comfort and familiarity of your own home. Familiar surroundings are important to those living with dementia
  • Live life your way with choice and independence
  • Complex needs can be supported during late stage or advanced dementia
  • Improved health outcomes – fewer falls, lower rates of infection, hospital admissions and the use of antipsychotic medication for those with dementia
  • Safest type of care during the Covid-19 pandemic
  • Peace of mind for you and your family
  • Comparable costs to dementia care in a quality nursing home – very cost effective for couples
  • Estate remains with the family

VISITING/DOMICILIARY CARE

  • One-to-one care
  • Flexible number and frequency of visits
  • Cost effective where care needs are low
  • The ability to stay at home with support and not move into a care home
  • Familiar faces most of the time, which is welcoming to those living with dementia

CARE HOMES

  • A safe and secure environment
  • No home maintenance required
  • Meals are planned and cooked for you
  • Arranged activities and social events
  • Can still be part of local community if moving locally

LIMITATIONS

LIVE-IN CARE

  • Adjusting to a carer being in your home
  • A spare room is needed
  • Home modifications may be required
  • Home maintenance still required

VISITING/DOMICILIARY CARE

  • Short visits do not always facilitate a deep-rooted relationship to be formed and can be confusing for a person in 7 stages of dementia
  • You won’t be guaranteed the same carers. Unfamiliar faces can cause anxiety for a person living with dementia
  • Short visits do not allow for quality care of specialist or complex conditions like advanced dementia
  • Visiting carers increase chances of Covid-19 transmission
  • No care and support during the night. For many care is crucial during the night to ensure a person is safe and well

CARE HOMES

  • Stress and upheaval of leaving a much-loved home. This can cause much distress for a person at any stage of their dementia journey
  • Leaving a loved community
  • Loss of family pets
  • Moving all your possessions into one room
  • Family home sold to pay care home fees leaving nothing for the family
  • Care team ratios – one carer will be looking after 4/6 residents with different needs
  • Imposed routines – life is driven by fixed daily patterns (waking, eating, socialising)
  • Higher rates of hospital admissions and infections, including Coronavirus
  • Not getting on with other residents

How live-in care can help at each stage of dementia

It is possible for a person to live well with during the 7 stages of dementia in their own home with the right care in place. There is no need to endure the upheaval and disruption caused from a move to a care or nursing home. At The Good Care Group our carers are trained to understand the effects of dementia throughout all the 7 stages of dementia.

Early-stage dementia

At this stage our carers will focus on ensuring the person living with early onset dementia is able to live as independently as possible with the support they require, which will be provided in a way that looks to enhance their well-being.

Living well with dementia strategies can be put in place to support memory loss – writing to do lists, settling on one place to keep certain items, like your wallet and keys, having a pad close by to take notes.

Lifestyle choices will be encouraged and actively promoted by our carer. Eating well and exercising regularly, as well as keeping the brain active through puzzles, reading and socialising are all proven to have a positive impact on well-being.

A person in the early stages of dementia is likely to experience changes in their mood and easily become anxious, depressed or more easily annoyed and some will lose interest in their life. Our carers are trained to work with this situation and encourage and stimulate positive attitude and thinking to lift spirits and enhance well-being.

It is important at this stage that families communicate with each other and plan for the future. If you are caring for your loved one at this stage it is prudent to research care providers and costs of care so you are ready to make an informed decision as their needs increase.

Mid-stage dementia

While everyone’s journey with dementia is different, the signs of the middle stage of the disease can mark the moment when changes to the care arrangements are necessary. The middle stage can be the longest and sometimes the most challenging for the person living with dementia and those that care for them.

Our professional carers are trained to identify changing care needs and move at your pace, adapting their approach as needs increase. They can offer the physical support needed for example help with bathing, dress and eating, as well as encouraging gentle exercise that maintains strength and mobility. If personal hygiene is becoming an issue, our sensitive carers are on hand to make sure your loved one’s hygiene standards are maintained. As their diet changes, a live-in carer is there to ensure they get a healthy, balanced and nutritious diet and that hydration is maintained.

The carers employed by The Good Care Group are sensitive to emotions and respond positively to any signs of distress, finding shared, simplified language that enables the person living with dementia to communicate and express feelings.

Late-stage dementia

Dementia in all forms is a progressive condition and by the time it reaches later stages it is very likely that you will need 24-hour care and support. During this stage the person living with dementia is likely to have become extremely frail, with severe memory loss and may well have trouble with communicating, eating and even swallowing. They may also spend long periods of time inactive and become prone to infections.

Communication is key at this stage. All our carers are trained to have meaningful interactions with those they are caring for when speech is limited – eye contact, gestures or shared experiences all provide ways to make a connection. Listening to a piece of music together can help someone feel safe, connected and loved.

During late-stage dementia more specialist medical care may be needed. At The Good Care Group our care teams are supported by leading clinical experts in the field of dementia care who guide our approach to ensure a person can live well with dementia at home. Carers can draw on the expertise of our in-house Consultant Admiral Nurse and Occupational Therapist. Carers proactively use techniques required for safe moving, pre-empting medical issues, identifying infections that reduce unnecessary hospital admissions. For many our care is life changing with fewer falls, less infections and reliance on antipsychotic drugs.

Useful resources

To support you and your family we have created a useful Dementia Care Guide which provides you with information and advice on how to provide person-centred dementia care following a diagnosis of dementia. There is also a number of dementia charities across the UK who provide families with help, advice and support when they need it most, including Dementia UK and the Alzheimer’s Society.

Talk to us about your dementia care needs

Our friendly and experienced team is here to help you and your family make sense of the options available to you. Call us today – we will help you every step of the way.


020 3728 7577

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