Date published: 22 August, 2024
Date last updated: 22 August, 2024
Dementia, NHS RightCare, Patient care

RightCare dementia scenario

Foreword

Dementia continues to place a huge pressure on the health and social care system. Evidence indicates that people with dementia occupy 25% of acute hospital beds (Healthcare Quality Improvement Partnership), stay in hospital twice as long (Alzheimer’s Society) and are admitted for infections treatable in the community (Sampson E et al, 2018).

Hospital admission can trigger distress, confusion and delirium for someone with dementia that can contribute to a decline in functioning and a reduced ability to return home to independent living (NICE: Hospital care).

Research estimates that 944,000 people in the UK have dementia, which is expected to increase to more than 1 million by 2030 and more than 1.6 million by 20505. One in 11 people over the age of 65 have dementia and there are 70,000 people whose condition began under the age of 65 (young onset).

In 2021, the estimated cost of dementia in the UK was £25 billion. By 2030 it is estimated that this will rise to £30 billion and in 2050 it will be approximately £47 billion (Alzheimer’s Research UK). The health and social care costs for dementia are higher than cancer and coronary heart disease. In addition, carers of people with dementia provide 1.1 billion hours of unpaid care each year and are at increased risk of stress, depression and other health complications (Brodaty H et al, 2009).

There are significant inequalities in dementia risk, incidence, diagnosis and management that need consideration. Factors include age, sex and gender, socioeconomic status, learning disability and ethnicity. In the UK, 65% of people with dementia are women. People in lower socioeconomic groups and people with a learning disability are three times more likely to develop dementia earlier in life.

People from Black, Asian and other ethnic minority communities tend to have higher levels of diabetes, hypertension, cardiovascular disease and other modifiable risk factors that put them at greater risk of developing dementia. Dementia incidence is over 20% higher among Black adults compared to the UK average (Alzheimer’s Research UK).

There are currently more than 25,000 older Black and ethnic minority people living with dementia in England and Wales. This number is expected to double by 2026, with the steepest increase in South Asian communities. These communities also often face delays in diagnosis and barriers in accessing support (Alzheimer’s Society).

Furthermore, people with dementia under the age of 65 (young onset dementia) can be poorly recognised and misdiagnosed which leads to delays in accessing crucial support.

Importantly, the experience of living with or caring for someone with dementia is influenced by culture. It is essential services meet the needs and wishes of people from a wide range of backgrounds, including (but not limited to) overcoming barriers linked to language and education, and adapting care and support to religious beliefs and cultural traditions (Intercultural dementia care guide).

The key challenges for the health and care system with regard to dementia are to ensure timely and high quality diagnosis, and planned integrated care to aid provision of appropriate post diagnostic support.

Ultimately, this will improve outcomes for those living with dementia and their carers, and will enable them to live as well as possible throughout their care journey. It will also reduce the pressure on the health system by reducing the number of emergency care admissions and hospital stays.

Jeremy Isaacs, National Clinical Director for Dementia, NHS England

RightCare scenarios

RightCare scenarios put the person at the centre of the story. They use fictional patients to show the difference between a suboptimal, but realistic, pathway of care compared to an optimal one.

RightCare scenarios help local systems understand how patient outcomes and quality of life can be improved as a result of shifting the care pathway from a suboptimal journey to one that consistently delivers timely, evidence-based excellence.

This scenario focuses on an optimal pathway that is applicable to all. However, as raised in the introduction, systems need to ensure that consideration is given to reflect personal circumstances and requirements and for different protected characteristics in order to meet the needs of all people within their locality.

The fictional patient in the scenario has support from his family; however, it is recognised this is not always the case. It is predicted that around 240,000 people will be living alone with dementia in the UK by 2039 (Alzheimer’s Society). We recognise that around 90% of people with dementia have comorbidities, however, for the purpose of this scenario we are highlighting dementia care.

We invite systems to consider the following questions when using this scenario:

  • Do you recognise any elements of the patient journey highlighted in this scenario?
  • Which journey best reflects the service within your area?
  • What parts of the patient journey and experience can you improve?

This scenario has been developed with the support of expert stakeholders. The aim is to help clinicians and commissioners improve value and outcomes for this patient group.

If you have any questions about this scenario, please contact us at rightcare@nhs.net.

Clinical introduction

Dementia is an umbrella term for a range of progressive diseases that affect the brain. Each type of dementia stops a person’s brain cells working properly in specific areas, for example affecting their ability to remember, think or speak. These impairments lead to difficulty in activities of daily life including self-care, work and leisure, and social relationships. If undiagnosed and untreated, dementia increases the risk of poor outcomes for the person and their carers, and this in turn increases cost and resource pressures on health and care systems.

The word ‘‘dementia’’ is used to describe a range of cognitive symptoms – such as memory loss, confusion, and problems with speech and understanding – that get worse over time and affect an individual’s ability to function in everyday life. Dementia can affect a person at any age but the risk increases with age.

Alzheimer’s disease is the most common form of dementia. Other types of dementia include vascular dementia, dementia with Lewy bodies, Parkinson’s disease dementia and frontotemporal dementia (which causes changes in personality and behaviour and/or language function). Alzheimer’s disease and other dementias are the leading cause of death in the UK (Office for National Statistics).

A diagnosis is based on a combination of assessments and tests that may be carried out by a GP or, more typically, by a specialist at a memory service or in a neurology clinic. Whilst some treatments for the symptoms of dementia are available, and new types of treatment are emerging, there is no cure for dementia. A timely diagnosis ensures that people with dementia get the right treatment and support, and, alongside the people close to them, prepare for the future.

Some risk factors for dementia such as age, sex, and genetics cannot be avoided. However, research suggests that a significant proportion of dementia could be prevented or delayed through addressing modifiable risk factors such as air pollution, hearing loss, social exclusion, smoking, obesity, high alcohol intake and lack of exercise (The Lancet Commission).

People with young onset dementia experience a broader range of diagnoses, including rare, atypical and genetic forms. Symptom recognition and accurate diagnoses of these complex conditions requires specialist assessment usually from a multidisciplinary team, including neurology. Expert support and guidance appropriate to people experiencing dementia in the younger stage of life is important for them to adapt at the time of diagnosis and in the future.

Young onset dementia

Dementia is described as ‘young onset’ when the symptoms start under the age of 65. Younger people are more likely to experience an atypical variant of Alzheimer’s, a rarer dementia such as frontotemporal dementia (FTD) or a familial form of Alzheimer’s, FTD or vascular dementia caused by a genetic mutation.

An estimated 70,800 people (7.5%) of the estimated 944,000 people living with dementia in the UK have young onset dementia (Alzheimer’s Research UK) with 92 young onset dementia diagnoses per 100,000 of the general population between age 30-64 (Carter J et al, 2022).

People with young onset dementia often experience less common symptoms such as behaviour and personality changes, decline in language skills or visuo spatial problems. A lack of understanding or awareness of these symptoms, along with fear or stigma, can cause delays in people seeing a GP.

People with young onset dementia have specific needs, partly as a result of experiencing rarer, atypical dementias and their differing symptoms. This can be due to their age and stage of life – they may, for example, be working, have dependent children and financial commitments such as a mortgage, so will be facing a loss of earnings while being unable to draw a pension.

A better awareness of young onset dementia in primary care and rapid access to advice from a specialist service with expertise in young onset dementia is vital to expedite timely referral for diagnosis and ongoing support. Although support needs and considerations may be different, the themes of optimal care from pre-diagnosis through to the end of life highlighted in this scenario are equally important to those with young onset dementia.

Please see below further information and resources on young onset dementia:

Young Dementia Network (hosted by Dementia UK):

Dementia UK:

Alzheimer’s Research UK:

Rare Dementia Support:

Royal College of Psychiatrists:

Introducing Tom and Barbara

Tom is 77 years old and is married to Barbara. They have a son, John, 52, and three grandchildren who live nearby. They have been retired since their 60s.

Tom and Barbara love spending time with John and the grandchildren and look forward to their regular weekend visits. They have always had active social lives and take part in hobbies, both separately and together. Tom is a keen walker and also loves to go fishing. He used to sing in the local choir many years ago and although he hasn’t been a member for a long time he still loves to sing around the house and has been known to get up on the karaoke at the local pub on occasion.

Both Tom and Barbara are keen sports fans and held season tickets at their beloved local football club for many years. They also love spending time in the garden and visiting garden centres.

The start of Tom and Barbara’s journey: symptoms

Tom has always had an excellent memory and attention to detail, but Barbara notices that recently he has started to get forgetful. He forgets to buy things when out shopping, even if he has a list. He has always made a fuss of family birthdays but this year he forgot John’s birthday until Barbara reminded him. He often repeats himself during conversations and sometimes forgets the names of their friends or gets the grandchildren’s names mixed up. Barbara has also noticed that he often asks her the storyline of their favourite television programmes and struggles to follow the plot.

Read on to see how Tom and Barbara experience two very different journeys and outcomes.

Look out for ‘Information points’ throughout the suboptimal and optimal journeys; these highlight the key themes of optimal care. Find out more about information points. 

Suboptimal journey

Year 1: Barbara approaches their GP about Tom’s memory loss

Barbara is worried about Tom and approaches their GP during her own routine health check. The GP suggests she bring Tom in for an appointment. Barbara speaks to Tom but he says he is fine, that it is just old age and he doesn’t need to see the doctor.

Tom gradually deteriorates

Over the next year, Tom’s memory and behaviour gradually gets worse. Because it has crept up on her, Barbara doesn’t really react and simply adjusts to things. It is easier to do the shopping herself rather than send Tom and she pays someone to come and do the garden because he gets the plants mixed up.

Tom first experiences urinary incontinence when out in the garden and he is very embarrassed. Barbara helps him get cleaned up and they put it down to him being distracted. But as the year progresses it starts to happen more regularly.

Tom and Barbara begin to have arguments because Barbara gets frustrated with Tom’s forgetfulness.

Their son, John, and their grandchildren also begin to notice that things are not quite right. One day Tom goes out for a short walk to the town centre but doesn’t come back for hours. Barbara fears the worst and calls the police.

The police eventually find Tom in a local park at 11pm, unharmed but cold, hungry and thirsty.

Tom becomes delirious and is admitted to hospital with an infection

A few weeks later Tom has become more irritable than usual. One evening he starts shouting at Barbara saying that she has hidden his favourite book as he can’t find it. He is so upset that he wets himself but won’t let Barbara help him get washed and changed. Later that evening, he starts shouting at Barbara again and throws a cup at her. This scares Barbara as it is very out of character and she phones NHS111 who arrange an appointment with the out-of-hours GP.

During the GP appointment, the GP tries to assess Tom and they ask him if he knows what year it is and the name of the Prime Minister. Tom reacts angrily to this and pushes over a chair in frustration.

The GP is very concerned and recognises that Tom is presenting signs of delirium that could be due to an infection. They call an ambulance and Tom is admitted to hospital.

Tom becomes more confused although he does have some lucid moments. Barbara is not allowed to stay with him which adds to his confusion and distress. He keeps shouting for Barbara and trying to get out of bed, which results in the bed rails being put up for his safety. Following national diagnostic guidance, it is confirmed that Tom has a urinary tract infection (UTI) and he starts appropriate treatment.

Over the next couple of weeks, Tom is transferred to three different wards because they always seem to need the bed for someone else. This adds to Tom’s confusion and leaves him feeling scared as he doesn’t really know where he is and Barbara is not with him, outside of normal visiting hours, to reassure him. In his lucid moments, he tells Barbara he is scared that he is going to be taken away.

Tom is discharged from hospital with little support

By now, Tom is experiencing urinary and bowel incontinence every day and he is wearing wrap-around incontinence pads that he keeps trying to remove. Barbara asks the nurses about the urinary and bowel incontinence and is told that it is only to be expected at his age and with his “problems”.

A week later Tom is ready to be discharged home. His bladder and bowel control are not assessed and options for him are not considered other than to provide incontinence pads. Tom’s memory problems means he can’t recognise the toilet anymore and needs guidance along with a toileting plan to enhance his dignity.

The clinical team looking after Tom assume he has a lack of capacity to make decisions about his future needs and do not assess him. This means that by the time Barbara asks their GP to assess Tom’s mental capacity, a few months later, it is too late to establish an advance care plan or nominate a Lasting Power of Attorney (for both health and welfare, and property and financial affairs), but Barbara and John are able to make ‘best interest decisions’ on behalf of Tom.

Despite this, Barbara does not feel involved in any of the decisions that are taken about Tom’s care. She often feels helpless and unsure what to do.

Information point 1: Supporting family members and others caring for people with dementia

Year 3: Tom deteriorates further and is admitted to hospital again

It is now 14 months since Tom was discharged from hospital and he is 79 years old. He has become highly confused and is experiencing incontinence several times a day. He often fails to recognise Barbara and his surroundings and although John still visits regularly, he rarely brings the grandchildren as he feels it is too much for Tom and the kids. Whilst Barbara understands this she is upset as she now doesn’t see much of them.

One afternoon, Tom becomes highly agitated and restless and Barbara can’t calm him down. Later that evening, she calls an ambulance as Tom is very distressed and she doesn’t know what else to do.

Tom is taken to A&E and admitted to hospital where it is confirmed that he has another UTI. The A&E consultant also refers Tom back to his GP to monitor cognition and for onward referral to a memory clinic, if appropriate. He remains in hospital for two weeks and has a similar experience to before. However, on this occasion he is so agitated and distressed that the hospital doctors start him on antipsychotic medication to help him remain calm.

When Barbara visits him in hospital she is shocked at how groggy he seems. His walking has slowed down and he nearly falls over on a couple of occasions while in hospital.

Tom is calmer when he is discharged from hospital, but the antipsychotic medication is continued. He remains less alert and physically slower than before and Barbara has to keep a close eye on him to make sure he doesn’t trip over at home. After a few weeks Barbara is so worried that she asks the GP to review Tom’s medication. The GP stops the antipsychotic medication and to Barbara’s great relief, Tom brightens up and starts walking normally again.

Tom receives a formal diagnosis

Following a referral via his GP, Tom goes to the memory clinic and is given a formal diagnosis of Alzheimer’s disease. Due to Tom’s history, behaviour and based on clinical assessments, there is no clinical reason to carry out a brain scan as the diagnosis is clear. He is prescribed an acetylcholinesterase inhibitor to treat his Alzheimer’s disease (this prevents the breakdown of a chemical that can help the communication between nerve cells).

Although this is upsetting for Barbara she feels relieved that Tom now has a diagnosis. Barbara is given little information about the condition or where to go to for support so leaves feeling isolated, unsure of their future together and what to do next.

Barbara feels overwhelmed and isolated

It is now six months on and day to day tasks are much more difficult for Tom. He can’t remember how to dress himself or prepare a simple meal and he has no concept of time. He often forgets to eat and drink if Barbara doesn’t remind him and he doesn’t use the toilet at all anymore, solely relying on incontinence pads.

Barbara tries her best to help Tom by setting routines and structure to their day such as getting Tom up and dressed at the same time and eating at the same time. He has completely lost his appetite and Barbara often has to coax him to eat or drink anything.

Barbara also has to help him get washed which he often doesn’t want to do which she finds very difficult and tiring. They both join a post diagnostic support group that John has found online but they often have to cancel as Tom has low mood and doesn’t want to go.

Their social life suffers as friends stop calling by because Tom can be rude and inappropriate without meaning to be.

John looks after Tom when Barbara needs to go out but it upsets Barbara that he has to do this. She wants to shelter him from how badly Tom has deteriorated so she stops going out with friends.

Barbara continues trying to find things that Tom enjoys that they can do together like walking and listening to music but it is difficult as he has a very short attention span and gets tired quickly. Loud noises often makes him emotional and Barbara has to console him. He can’t express why he is upset which means Barbara doesn’t understand his triggers or how to avoid them.

Barbara is physically and mentally exhausted and often feels stressed and overwhelmed by the challenges she and Tom face. She knows she is doing her best but is constantly worried that she isn’t doing the right thing for Tom.

Year 4: Tom is admitted to hospital and is too frail to return home

It is now Christmas, a year since Tom’s diagnosis, and he has become increasingly frail. He has no interest in food, is very lethargic and sleeps a lot. He has lost a lot of weight and Barbara is concerned. She has tried to adapt his diet to find things he wants to eat but nothing has worked.

Barbara is at her wits end as she has not been able to get Tom to eat for two days. She takes him to A&E where he is checked over and admitted for support to increase his weight and to rehydrate.

She speaks to the team at the hospital looking after Tom including a social worker who agrees Tom is too frail and advanced in his dementia to go home. They tell Barbara that he needs to be admitted to a care home.

Tom remains in hospital whilst they try and arrange a care home for him. After six weeks in hospital, Tom contracts pneumonia and dies a week later, aged 80.

Barbara is heartbroken and feels guilty that she could not care for Tom at home, where she believes he would rather have been at the end of his life.

Let’s see how Tom and Barbara’s journey could be so much better.

We start the optimal journey at the same place as the suboptimal story…

Optimal journey

Year 1: GP review and memory clinic referral

Barbara visits her GP for a routine health check and approaches them about Tom’s memory loss. The GP suggests she bring Tom in for an appointment. They give her a leaflet about memory loss and signpost her to information on the NHS website.

Feeling empowered by this information, she discusses her concerns with Tom. Although he is initially reluctant they agree to visit the GP together.

During the appointment their GP, Dr Turner, orders blood tests for Tom and reviews his medical records. From the conversation with Tom and Barbara they agree that Tom is still functioning independently and undertake a brief memory check which even Barbara can tell he didn’t do very well on.

Tom agrees to be referred to the local memory clinic and Dr Turner makes him and Barbara aware of the Next Steps website to provide them with an idea of what to expect next.

Tom is assessed at the memory clinic by Dr Fisher and is diagnosed with mild cognitive impairment. He is referred for support with managing memory difficulties and receives a follow up appointment for six months’ time (and is advised he will be reviewed every six months). Tom and Barbara are given advice on how Tom can live well with mild cognitive impairment by having a familiar routine, using calendars and diaries, breaking down complicated tasks, reducing stress and anxiety and sleeping well.

Year 2: Tom is diagnosed with Alzheimer’s disease

After 18 months, Tom attends one of his six-monthly appointments at the memory clinic. It is clear from tests and the conversation with Tom and Barbara, that Tom has declined further. Barbara explains that she has noticed that he is now struggling with some daily activities. He has difficulty making decisions and Barbara often has to remind him of recent events and conversations. She gets frustrated with Tom and loses patience which makes her upset as she knows it’s not his fault.

Dr Fisher explains that Tom could have symptoms of dementia due to early stage Alzheimer’s disease. Tom is referred for a brain scan to make sure there is no other cause for his symptoms.

When Tom and Barbara return to the memory clinic for the results of his brain scan, Dr Fisher explains that the scan supports the diagnosis of Alzheimer’s disease. It shows general shrinkage of the brain, greater than expected for his age, which is particularly noticeable in the memory areas (the hippocampi).

Dr Fisher confirms Tom understands his diagnosis and prescribes him with donepezil (an acetylcholinesterase inhibitor that prevents the breakdown of a chemical involved in the communication between nerve cells). Dr Fisher emphasises that whilst there is no cure for Alzheimer’s disease, and the condition will progress over time, medication can temporarily stabilise and, in some people, improve symptoms. He also explains that there are approaches that can help to slow the progression and refers Tom to the Community Reablement Team for cognitive rehabilitation and reablement. This team works closely with the NHS and will include an Occupational Therapist. The team will also be able to advise on next steps that may be needed to look at any long-term care and support requirements – plus support for Barbara too, as Tom’s main carer.

Information point 2: Referral to a specialist dementia diagnostic service

Despite understanding this could be a possibility, the diagnosis is still a huge shock for Tom and Barbara. They are both very upset and feel scared for their future. Dr Fisher explains to them that by having a diagnosis, Tom can now access a great deal of support locally and suggests they call the Dementia UK helpline, to address the shock of the diagnosis and to speak to an Admiral Nurse. Tom and Barbara are also signposted to the Alzheimer’s Society for further information, which they both find reassuring.

The results of Tom’s scan and diagnosis are shared with his GP and uploaded to his integrated care record.

Tom and Barbara are introduced to their Dementia Adviser

Dr Fisher introduces Tom and Barbara to their Dementia Adviser, Maria. Maria explains the non-clinical role of a Dementia Adviser as someone who makes it easier for people with dementia to self-manage, live more independently and seek out the right support at the right time. They help to deliver high quality, personalised dementia care.

Information point 3: Having a single named practitioner to coordinate care

Tom and Barbara take to Maria straight away and they bond over their mutual love for their local football club. Maria is able to give them advice on how to stay active as well as how to manage potential disagreements.

Tom and Barbara are supported by Maria to start an initial personalised care plan for post diagnostic support. This includes input from Tom’s GP and is recorded as part of his integrated care record which can be accessed by everyone involved in Tom’s care. Maria liaises with the Occupational Therapist so that the reablement plan is integrated into Tom’s personalised care plan. In addition, Maria will ensure that any relevant care and support arrangements are integrated into Tom’s personalised care plan.

The plan will be reviewed with Tom and Barbara, at least annually, by a healthcare and relevant care professional involved in Tom’s care to ensure they are both receiving adequate care and support. It will, in time, cover post diagnostic support, advance care planning, medication review, and any other conditions that Tom may develop. This ensures the care plan stays up-to-date and takes into account Tom’s needs, whilst also making sure that Barbara is supported so she can continue in her caring role.

Maria refers Tom and Barbara to the Admiral Nurse support and explains what support they can provide. Admiral Nurses are specialists in dementia and support families with the many complex challenges of the condition, providing free, specialist health advice, compassionate emotional and psychological support and understanding and support to plan for the future.

Maria signposts Barbara to a range of support groups and resources including Dementia Together and TiDE (Together In Dementia Everyday) for support and information on living well with dementia.

She also encourages her to join the local Strategies for Relatives (START) programme (an eight week programme of individual therapy sessions aimed to reduce depression and anxiety in family carers of a person with dementia) and makes their son, John, aware of the Alzheimer’s Society’s Dementia Talking Point, an online community that anyone affected by dementia can join and share experiences with other people also affected.

Information point 4: Access to a range of tailored activities to promote wellbeing

Maria discusses with them the benefits of having an advance care plan in place as well as the importance of doing this early in Tom’s dementia journey, adding that it can be updated if Tom’s preferences change. She also advises them on how to begin the process of agreeing a Lasting Power of Attorney, for both health and welfare and property and financial affairs, when they feel ready.

Information point 5: Advance care planning is discussed at diagnosis and throughout care

Tom is referred for Cognitive Rehabilitation Therapy (C RT), a six week individual programme which is offered to people with mild to moderate dementia and has been found to help with cognitive functional skills.

Maria makes Tom aware of dementia research taking place at the local hospital. It includes a trial on a new drug that could slow down the progression of Alzheimer’s disease, which Tom joins. Maria also tells Tom and Barbara about a number of services including Join Dementia Research (signing up is not limited to those with dementia), the local dementia café and a local ‘singing for the brain’ group, which they join.

Although they have been given a lot of information, they end the session feeling positive and supported. Maria reassures them that it can feel overwhelming but they can contact her at any time if they have any questions or concerns.

Not long after Tom’s diagnosis, John visits his local GP practice for an NHS health check. He tells the practice nurse about his dad’s diagnosis and his concerns that it is inevitable that he will be diagnosed with Alzheimer’s disease in the future.

The nurse explains that whilst there is no definitive way to prevent all types of dementia, there is evidence that a healthy lifestyle can help to reduce the risk of developing the disease. She advises John that he can reduce his risk of dementia by eating a healthy diet, maintaining a healthy weight, exercising regularly, reducing his alcohol intake, not smoking and keeping his blood pressure at a healthy level.

Information point 6: Preventing well – risk of people developing dementia is minimised

Year 3: Tom gets an infection and they continue to find the dementia cafe hugely valuable

It is now a year after his diagnosis and Tom’s symptoms have progressed. Both Tom and Barbara have found this very challenging but they have found the services that Maria signposted them to helpful. Barbara has particularly loved the TiDE events as she’s been able to meet other unpaid carers in a similar situation.

Tom is getting up more through the night to go to the toilet. He gets caught out a few times unintentionally passing urine throughout the day before reaching the toilet.

The GP checks there aren’t any co-existing conditions such as a prostate problem and refers Tom to a specialist continence service to ensure effective management of his bladder and bowel health going forward.

The specialist continence service undertakes an initial assessment and then a six week follow up. Tom and Barbara are advised on how to keep his bowel and bladder healthy which includes good fluid and well-balanced food intake and regular toileting. They also suggest switching to decaffeinated and full-flavoured, strong tasting drinks to keep him hydrated and encourage him to drink more fluids.

Maria talks to Tom and Barbara again about the benefits of making a lasting power of attorney for both health and welfare, and property and financial affairs. They both agree that it is the right time to put this in place as it will make things easier for them both as Tom’s condition progresses. Tom appoints Barbara and John as his attorneys and Maria supports them all through the process.

Tom and Barbara are still enjoying going to the dementia café as they have made friends with others who are in a similar situation. Barbara can talk to fellow carers who understand what she is going through as well as healthcare professionals who can signpost her to relevant support services.

John also takes Tom regularly to give Barbara a chance to meet up with her friends and recharge her batteries. She also knows she can ring the Alzheimer’s Society’s dementia support helpline or Dementia UK’s dementia helpline to speak to a dementia specialist nurse to discuss any worries she has.

Year 3: Tom is admitted to hospital after a fall

Whilst out walking with a local dementia group, Tom slips and hurts his leg. He is taken to A&E but it is unclear from the x-ray if it is a fracture so he is admitted to hospital. Tom is assessed for frailty, using the electronic Frailty Index (eFI), whilst in A&E and is confirmed to have a frailty score of five. This means he is mildly frail and will need more support from Barbara as he will progressively struggle with some activities such as walking outside alone and preparing a light meal.

Tom’s medicines are reconciled by the ward pharmacist which means accurate information about his medication, compliance and concordance are available in a timely manner.

The nurses recognise his diagnosis of dementia from his personalised care plan and complete a ‘this is me’ form which gives lots of information about Tom and his life story. This is identified by the Butterfly Scheme which provides a system of hospital care for people living with dementia or who find that their memory isn’t as reliable as it used to be. The nurses are particularly careful about providing Tom with information and make sure his drinks are within reach so he does not become dehydrated.

The nurses on the ward also refer Tom and Barbara to the Transfer of Care Admiral Nurse, James. James is based at the local hospital to support families living with dementia and experiencing challenges during a hospital admission. James visits the ward and introduces himself, sharing how he can help support both Barbara, Tom and the ward staff with care planning and arising challenges of dementia during the hospital admission and after their discharge back home.

The ward is also signed up to John’s Campaign which means Barbara is able to stay the night with Tom and visit him whenever she needs to. This makes Tom feel much more relaxed and Barbara feel included in his care. She is happy and relieved that she is with him as she knows she wouldn’t be able to relax if she was at home.

A Comprehensive Geriatric Assessment is undertaken whilst Tom is in hospital and a care plan agreed outlining what health and social care support should be put in place for Tom and Barbara at home. This plan is shared with Tom, Barbara, and their GP as per Hospital Discharge Guidance. Tom and Barbara are advised that their local area has Frailty Hospital at Home Virtual Wards so Tom can be treated in his own home in the future, if appropriate. Both Tom and Barbara like this idea and it is written into Tom’s care plan.

As discharge planning continues, the nurses on the ward update James, who comes to reassure both Tom and Barbara that he will be supporting them during the discharge process back home. James will support discharge planning, considering any previous challenges associated with the symptoms of dementia, and once they are at home make sure that any challenges are addressed to reduce the risk of readmission to hospital.

Tom is discharged and he continues with social activities

It is confirmed that Tom has not fractured his leg and that it is just badly bruised so he is discharged the next day. Tom’s medication is reviewed and continued as it is not felt to have contributed to his admission. Clinical pharmacists on the ward ensure he has enough medication to last until his usual supply is available from his GP and local pharmacy.

On discharge, Tom’s GP and memory clinic are informed that there were no changes to his medication regimen whilst he was an inpatient.

Once home, James hands over to Maria and the community Admiral Nurse as well as other members of the integrated care team (ICT) to ensure they are fully informed to continue to support Tom and Barbara at home.

The community Admiral Nurse can now address any support needs to ensure the ICT feel confident and competent in dementia care to continue to support Tom and Barbara at home and refer their care back to her as challenges and complexities associated with dementia rearise.

As a result of Tom’s deterioration, Tom’s GP consults the NICE dementia guideline and notes he is able to start Tom on memantine without needing to refer him back to the memory clinic. The GP explains that memantine provides an additional chemical boost to the brain that has been shown to be beneficial in people with moderate stage Alzheimer’s disease.

Over the next couple of years, Tom’s symptoms progress and he often feels confused and anxious in the evening. Barbara learns that this is known as “sundowning”. Maria helps Barbara incorporate different techniques into their daily routine to help manage and prevent this. Tom is also referred for Cognitive Stimulation Therapy (CST), a seven week programme which is offered to people with mild to moderate dementia and has been found to help with memory and thinking skills.

Tom and Barbara continue to be social and stay active. Tom still attends his groups (some they attend together, some enable Barbara some respite), including ‘Singing for the brain’ every Friday morning which he really looks forward to. Tom and Barbara continue to apply the methods for retaining information and carrying out activities that they have learned from their Occupational Therapist in the Cognitive Rehabilitation sessions.

Year 9: Tom is living well despite his dementia symptoms worsening

Tom is now 85 years old and he is struggling to keep up with all their commitments. He is more forgetful and becomes quite agitated in unfamiliar surroundings.

The forgetfulness seems to correlate to Tom’s bowel movements as he begins to experience incontinence regularly. Barbara self-refers Tom, following advice from the Admiral Nurse, to the specialist continence service again for refresher advice and support. They organise for an occupational therapist to visit their home to check it is safe (for example, that the bathroom is easy to recognise and use) and for an assessment to support Tom to recognise the toilet.

Tom leaves the clinical trial at this point as the trips to the local hospital every month for a blood test cause him a lot of distress.

Barbara notices that Tom is getting physically weaker and she is doing more for him. She often calls on Maria for support who reassures her she is doing a great job and advises Barbara that she can apply for respite care for Tom, via a local ‘Shared Lives’ scheme or their local authority. She also reminds her of the local carers’ network and support groups where she can meet other families in a similar position.

As Tom is no longer up to attending the regular groups he used to go to, John cares for him every Saturday morning to allow Barbara to have a break. Barbara uses this time to stay connected with friends and often attends craft sessions at the local garden centre. She feels that this respite is energising and enhances her relationship with Tom as she is less tired and stressed. She knows how lucky she is in having close family nearby who can support them.

Tom has an episode of delirium and is admitted to a virtual ward

One day, Tom seems very agitated and seems to have a tender red swollen calf. Barbara finds this very distressing and is unable to comfort him and calm him down.

On the advice of Maria, Barbara calls the Urgent Community Response team, who after an initial assessment at their home, recognise that Tom is presenting signs of delirium and refers him to the local virtual ward for treatment. They know that admitting Tom to hospital would exacerbate his symptoms.

Information point 7: A structured assessment is offered before starting treatment for distress

The Advanced Clinical Practitioner (ACP) from the virtual ward team assesses Tom at home and uses point of care testing. On examination, one of Tom’s legs has an area that is hot to the touch, red and swollen.

Blood tests are taken to look for markers of infection and he is diagnosed with cellulitis. As a result, they are able to discuss what is wrong and confirm the required treatment.

In discussion with Tom and Barbara, it is decided to admit Tom to the virtual ward. As part of his admission, Tom’s Comprehensive Geriatric Assessment is updated with his future care requests for treatment to reflect that he wants to be cared for on a virtual ward in the future for similar acute episodes.

The ACP explains what measurements they will need to take and submit back to the team using a tablet computer; these include Tom’s heart rate, oxygen levels, skin changes, temperature and respiration levels. Barbara is initially worried about taking these measurements and using the tablet but the nurse shows her how to use it. Barbara soon sees that it’s really easy and that the team are available 24/7 if they have any concerns. Also, any deterioration in Tom’s measurements will be picked up by the team straight away.

A nurse visits Tom every day to see how he is doing, review his infection markers and administer intravenous (IV) antibiotics for the cellulitis. Following national guidance, Tom is switched to oral antibiotics after a couple of days as his infection markers come down. Tom is discharged from the virtual ward. He continues to take the oral antibiotics and after five days he is feeling much better, although his leg will remain red and swollen for a while.

Year 12: Tom moves into a local care home and dies at the age of 90

Tom has lived well with dementia at home with Barbara for over 10 years before his care needs become too much for Barbara to cope with alone. He is 88 years old when, after all packages of care have been exhausted, Tom, Barbara and the team agree it is time for him to move into a local care home full time, as per Tom’s wishes which were documented in his advance care plan. The care home meets Tom’s specific needs and the staff are trained in dementia, to tier 2 of the Dementia Training Standards Framework. Barbara finds this really difficult but understands that this is the right decision for them both and is supported by her Admiral Nurse in making this decision.

Upon moving into the home, Tom and Barbara attend a structured medication review with the care home management team and Tom’s GP to talk about his medication. This is supported by the multidisciplinary team (MDT) who recommend steps to reduce unnecessary medication.

Tom’s personalised care plan is updated based on a person-centred holistic health assessment that takes place with Tom and Barbara within seven days of Tom moving into the home.

The GP recognises that Barbara is struggling to come to terms with Tom moving into a home. Barbara tells them that she feels lonely and guilty that Tom is no longer at home with her. The GP asks Barbara if she would be happy to see the Admiral Nurse explaining that they would be able to support her during this difficult time.

Barbara ensures the management and care staff are aware of Tom’s advance care plan that he put together with Maria. She finds it reassuring knowing that Tom’s wishes will be upheld as his dementia advances. She stays very involved in Tom’s care and visits him daily.

Some time later, Tom begins to express concerning behaviours including increasing agitation. The care home staff are worried about this escalating, so, after consulting with an Admiral Nurse, they use ‘ABC’ of behaviour management (Activating event (Antecedents), Behaviour, Consequence) charts, the CLEAR Dementia Care© resource and CLEAR Dementia Care App, to help understand Tom’s behaviour. They identify and address the triggers for Tom’s agitation, to help him settle and feel at ease.

When Tom dies at the age of 90, Barbara and the care home staff are able to ensure his wishes are fulfilled as they have been documented in his advance care plan.

Following Tom’s death, Barbara feels that she has let him down and finds these feelings quite distressing. The community Admiral Nurse checks in with Barbara knowing that families often struggle with these feelings after a loved one dies and supports her through the grieving process.

Barbara and John, whilst devastated by their loss, are able to take comfort in the knowledge that they had supported and cared for Tom in accordance with his wishes, enabling him to ‘live well’ and ‘die well’. 

Information points

1. Supporting family members and others caring for people with dementia

Unpaid carers often have high levels of stress due to the physical and mental challenges of caregiving and coping with other responsibilities. It is essential that informal carers have culturally appropriate support, taking into account their cultural preferences and needs, to enable them to manage the stresses and demands of caregiving and to fulfil their role. As per the duty in the Health and Care Act 2022, it is important to involve carers in all decisions around care.

2. Referral to a specialist dementia diagnostic service

Referral to dementia specialist diagnostic services ensures that diagnosis is timely and accurate, and dementia subtypes, such as Alzheimer’s disease and dementia with Lewy bodies, can be identified. It also means that people can access support and treatment sooner. The benefits of a timely diagnosis include the person and their family and carers knowing what to expect so that they can consider future mental capacity and make plans early (advance care planning).

  • NICE Dementia Quality statement 2: Diagnosis

3. People with dementia have a single named practitioner to coordinate their care

Dementia is a progressive condition with symptoms and care and support needs that change over time. People with dementia often have other long-term conditions and many different practitioners might be involved in supporting their health and social care needs. To ensure that people with dementia experience person-centred care, it is important that there is a person responsible for supporting them through the disease course. The type of support needed will depend on the stage of dementia. During the earlier stages, this might be signposting to different services and support, whereas later it might be coordinating all aspects of their health and social care. The person with dementia can also develop and review a care and support plan with their named person.

4. Access to a range of tailored activities to promote wellbeing

The symptoms of dementia make it harder for a person to take part in activities, to engage socially, to maintain their independence, to communicate effectively, to feel in control and to care for themselves. Providing enjoyable and health-enhancing activities that are suitable for the stage of dementia can help with this. Understanding the activities that a person prefers, and thinks are suitable and helpful, with the input of family and carers if needed, and adapting them to their strengths and needs, will make a person more likely to engage with the activities offered.

5. Advance care planning is discussed at diagnosis and each health and social care review

As dementia is a progressive condition, it is important for people to be able to make decisions about their future care early on, before they find it difficult to communicate or they lack the capacity to do so. This is known as advance care planning. It is important that there are opportunities to review and change the plan as the dementia progresses and if the preferences or needs of the person change.

Having an advance care plan ensures that the person with dementia can receive treatment and care according to their preferences, even when they can no longer express them.

6. Preventing well – risk of people developing dementia is minimised

There is limited awareness among both the public and practitioners that the risk of developing some types of dementia can be reduced, or the onset or progression delayed, through lifestyle changes. Making this clear in interventions and programmes that promote behaviour change, such as NHS Health Checks and stop smoking services, should encourage changes in behaviour in mid-life, which could lead to fewer people developing dementia in later life.

7. A structured assessment should take place before starting treatment for distress

People with dementia can become distressed, which can lead to symptoms such as increased aggression, anxiety, apathy, agitation, depression, delusions, hallucinations and sleep disturbances. But these behaviours may have other causes, including pain, delirium or inappropriate care. Understanding the causes of these behaviours and addressing them before offering non-pharmacological and pharmacological treatment can prevent things getting worse and avoid harm. It can also minimise the use of pharmacological interventions, such as antipsychotic medication and antidepressants.

Outcomes, cost and how they compare

The difference between the two journeys to Tom and Barbara’s life in terms of quality and outcomes is stark. In the optimal journey, Tom and Barbara are able to maintain a high quality of life doing the things that are important to them, and avoid unnecessary hospital admissions.

Along with the positive outcomes for Tom and Barbara, the optimal scenario also demonstrates how, by providing early diagnosis and access to expert support through a named practitioner, unnecessary hospital admissions can be avoided. Not only is this important to Tom and Barbara as it prevents potential complications for Tom, it also frees up hospital beds.

In the suboptimal journey, Tom is admitted for a total of 56 days, costing the NHS over £27,000 (see image on the left). The optimal journey produces a saving of just over £26,000.

We know that people with dementia are sometimes in hospital for conditions for which, were it not for the presence of dementia, they would not need to be admitted. We also know they often stay in hospital longer, are more likely to be readmitted and are more likely to die than patients without dementia who are admitted for the same reason20.

Tom is fortunate to have Barbara to support him as his carer. In the suboptimal journey we can see the huge physical and emotional toll this takes on Barbara. However, the optimal journey demonstrates how healthcare support and specifically targeted activities can enable Barbara to fulfil her caring responsibilities whilst looking after her own physical and mental health, helping to prevent deterioration and avoid possible crises.

Although Tom dies in the optimal journey, he lives for an additional 10 years and is supported, in accordance with his wishes, to ‘live well’ and ‘die well’, as per the dementia pathway.

Areas for systems to consider

At a local population level, there are likely to be many people living with, or at risk of, dementia. The following questions are to encourage discussion and investigation of key action areas that can lead to improvement within dementia care:

  • How do you promote dementia as a condition for which targeted interventions (including preventive measures) must be planned and delivered?
  • Are there clear and recognised processes for referral to specialist dementia diagnostic services across your system?
  • How do you ensure that people with dementia within your system have a single named practitioner to coordinate their care?
  • How do you ensure that people with dementia are encouraged and given the opportunity to discuss advance care planning at every opportunity throughout their care?
  • What range of activities are offered to people with dementia to promote wellbeing within your local system and how do you ensure these are utilised?
  • What support, and education and skills training is offered to carers of people with dementia in your local system to help them provide effective care and look after their own health and wellbeing?
  • How do you ensure that people with dementia have a structured assessment before starting treatment for distress?
  • Do you regularly review data and use it to identify and drive improvement in dementia care?
  • How do you understand the needs of the current and future health and care needs of your local population with regard to dementia? Have you considered undertaking a Joint Strategic Needs Assessment to address this?
  • Do your resources allow those who may be digitally excluded (due to factors such as a lack of digital skills and home internet access) to access dementia information and care in an equally positive way?

Additional resources and information

For more information about dementia, its management, guidelines, data and tools, you may wish to look at the following resources:

Key resources

National Institute for Health and Care Excellence (NICE)

  • Dementia: assessment, management and support for people living with dementia and their carers (NG97)
  • Dementia quality standard (QS184)
  • Shared decision making guideline (NG197)
  • Supporting the adult carer (QS200)
  • Delirium: prevention, diagnosis and management (CG103)
  • NICE impact dementia: prevent or delay the onset of dementia

Patient and professional organisations

Caring for someone with dementia

Publication reference: PRN01326

 

Date published: 22 August, 2024
Date last updated: 22 August, 2024