12.1 Working with People Living with Dementia

1. Introduction

As people get older, they may have problems with loss of memory. Whilst it is normal for memory to be affected by a number of different factors including age stress, tiredness, menopause and certain illnesses and medications, there could be underlying medical reasons for these memory issues – such as dementia – that require investigation and treatment

The following statistics relate to dementia in the UK:

• there are currently an estimated 1,000,000 people living with dementia;
• the number of people with dementia is predicted to rise to, 1.4m by 2040;
• one in 14 people over 65 have dementia. This rises to one in 6 people for those aged over 80;
• women are more likely than men to develop dementia in their lifetimes, partly due to the fact that women live longer than men;

the financial cost is £42 billion each year. (Alzheimers Society; Dementia Statistics Hub).

2. What is Dementia?

Dementia is a common condition for which the risk of developing increases with age and usually occurs in people over the age of 65.

It is a syndrome (which is a group of related symptoms) associated with an ongoing decline of brain function, and affects:

• memory loss;
• thinking speed;
• mental agility;
• language;
• understanding;
• judgement.

An adult with dementia may undergo a number of different mental changes. This can include losing the ability to empathise, experiencing auditory or visual hallucinations, becoming less emotionally stable) not having any interest in things and losing interest in activities they enjoyed before. Social situations may become more difficult as aspects of their personality change.

Where there are concerns that an adult with dementia no longer has mental capacity, safeguards should be put in place to ensure decisions are made in their best interests (see also Mental Capacity chapter).

The speed at which a person’s symptoms get worse and the way their condition develops depends on the cause of the dementia, as well as their overall health. This means that the symptoms, the rate of progress and experience of dementia are different for each person. There is currently no cure for dementia. However, there are treatments for dementia, including medication, that can help with managing symptoms.

An adult who is experiencing a number of the symptoms related to dementia may find it difficult to continue being independent and may need help from family or friends, including help to make decisions.

If a person – or their family or friends – is worried that they may be developing dementia, they should see their GP.  Following investigations, early diagnosis can help people get the right treatment, care and support and help those close to them to prepare, access support for themselves and plan ahead. With treatment, care and support many adults can lead active and fulfilled lives.

3. Different Types of Dementia

3.1 Alzheimer’s disease

Alzheimer’s disease is the most common cause of dementia; it causes changes to the chemistry and structure of the brain leading to the death of brain cells. Common symptoms of Alzheimer’s disease and other forms of dementia include:

• memory loss – especially problems with memory for recent events, such as forgetting messages, remembering routes or names, and asking questions repetitively;
• increasing difficulties with everyday tasks and activities;
• becoming confused in unfamiliar environments;
• difficulty finding the right words;
• difficulty with numbers and/or handling money in shops;
• changes in personality and mood;
• feeling depressed.

Early symptoms of dementia (sometimes called cognitive impairment) are often mild and may get worse only very gradually. This means that some people – and their family and friends – do no notice them, or take them seriously for quite a while.

3.2 Vascular dementia

Vascular dementia is caused when the oxygen supply to the brain fails and brain cells die as a result. This can either happen suddenly, for example after a stroke, or over time as a result of a number of small strokes. TSymptoms can start quite suddenly and quickly get worse, although they can also develop gradually over many months or years.

People with vascular dementia may also experience stroke-like symptoms, including muscle weakness or paralysis on one side of their body.

3.3 Dementia with Lewy bodies

This form of dementia is caused by tiny spherical structures that develop inside nerve cells in the brain, which leads to the degeneration of brain tissue. Dementia with Lewy bodies has many of the symptoms of Alzheimer’s disease, but people with the condition typically also experience:

• periods of being alert or drowsy, or fluctuating levels of confusion;
• visual hallucinations;
• becoming slower in their physical movements.

3.4 Frontotemporal dementia

Damage is usually focused in the front part of the brain, so personality and behaviour are initially more affected than memory. An adult with this type of dementia may become less sensitive to other people’s emotions, perhaps seeming cold and insensitive. They may also lose some of their inhibitions, leading to behaviour that is out of character for them, such as making inappropriate comments. Some adults also have language problems, which may result in them not speaking, speaking less than usual or having problems finding the right words.

4. Symptoms in Later Stage Dementia

As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages of their life, the affected adult is unlikely to be able to care for themselves and will require constant care and attention.

• Memory symptoms: adults may not recognise close family and friends, remember where they live, know where they are and find it impossible to understand simple pieces of information, carry out basic tasks or follow instructions.
• Communication problems: adults may have increasing difficulty speaking and may eventually not be able to speak at all.
• Mobility problems: adults may become less mobile eventually becoming unable to walk and therefore bedbound.
• Incontinence: urinary incontinence is common, and some people will also experience faecal incontinence.
• Eating, appetite and weight: losing their appetite and having difficulties eating or swallowing are common. This may lead to choking and an increased risk of chest infections. People with these problems may lose weight as well.

As well as issues of mental capacity, consideration should be given as to the adult’s human rights where they lack capacity to consent to care and treatment (see the chapters on Mental Capacity and Deprivation of Liberty Safeguards).

5. Adults with Care and Support Needs

Getting a dementia diagnosis is a frightening time and receiving the right treatment and care and support early, when a person has first shows symptoms, are some of the key points in the Care Act 2014 (see Promoting Wellbeing and Preventing, Reducing and Delaying Needs chapters).

While an adult with an early diagnosis of dementia may not initially require care and support services, they will inevitably do so as the disease progresses (see Assessment chapter). Their carers may also require assessment and a support plan (see Assessment chapter, Section 7, Carers’ Assessment).

Some adults with dementia will be self-funders through either their own financial means or that of a family member for example. They may not necessarily, therefore, require assessment by the local authority.

Where an adult is assessed by the local authority, a care and support plan should be drawn up with them, in relation to their expressed wishes and needs wherever possible, and those of their carer (see Care and Support Planning chapter).

6. Carers

Dementia can be a very distressing illness for both the adult, and their family and friends. They often see the personality and capabilities of their loved one change considerably, sometime to the point of being unrecognisable to how they were when they were well. For couples who have been together a long time, for example, it will be very upsetting when their partner or spouse no longer recognises them or is they are subject to physical attacks.

Where adults with dementia are being carried for at home by family or friends, it is essential that they receive all the multi-agency support necessary to enable them to care effectively for the adult for as long as they are able. This should include an assessment by the local authority if they so wish, and the compilation of a support plan for the carer to put in place interventions that enable them to continue caring for their loved one. This may include home visits from care workers to help with care and support needs, day centre placements, short breaks in residential homes or having someone live in at home whilst they go on holiday (see Carers’ Breaks chapter).

Carers may feel a range of emotions, including not wanting their loved one to go into long-term care, when in reality they are struggling to cope looking after them at home. A review of the carer’s support plan should include discussions about the longer term future for the adult and their carer, Staff should sensitively discuss with them what may happen, and any preferences they may have, if there comes a time when they can no longer care for the adult.

Both the adult’s care and support plan and the carer’s support plan should include plans for what should happen if the carer cannot care for the adult on either a short term (illness for example) or permanent basis, including planning for what may happen in an emergency situation.

7. Making Advance Decisions

People may make a number of decisions in advance to ensure their wishes and views are respected should they lose mental capacity in the future, as a result of dementia for example. This includes making advance decisions in relation to health care treatment, and authorising lasting power of attorney in relation to their health and welfare and / or property and financial affairs. See Making Advance Decisions chapter.

8. Safeguarding Adults with Dementia

As outlined above, common symptoms for adults with dementia include memory loss, disorientation, confusion, communication difficulties, behavioural issues, low mood and cognitive impairment. One or more of these factors can put an adult at risk of suffering or experiencing abuse or neglect.

They are vulnerable to abuse or neglect because:

• dementia can affect a person’s ability to communicate or can make them confused, so they may be unable to tell anyone what is happening to them;
• they may not be able to manage their own financial affairs, and if an unsuitable person takes this over for them, it gives them opportunity to steal the adult’s money or other possessions;
• they can be susceptible to psychological or physical abuse because carers cannot cope – either on a temporary or long term basis – and for example become angry, shout, care for them roughly or are otherwise unkind;
• they can be targeted by abusers who take advantage of their condition and know they may be unable to refuse them or they may give in to people who bossy or overbearing and who ignore their wishes;
• the adult may forget that the abuse has happened and not tell anyone.

As the condition progresses and the adult  gets worse, their ability to protect themself will lessen.

Where there are such concerns, the Royal Greenwich Safeguarding Adults Board procedures should be followed (see Adult Safeguarding chapter).

9. Training and Supervision

Training should be available for all staff working directly with adults with dementia, but also to other frontline staff to ensure they have an awareness and understanding of the issues that arise for both adults and their carers in relation to managing the symptoms of this very complex disease. This is particularly important considering the predicted rise of the number of people who will be affected by dementia over the next 10 years.

Staff supervision sessions need to recognise the challenge that working with adults with dementia can present for practitioners, who are involved in supporting both them and their carer. The symptoms of dementia can result in behaviour that is difficult to manage, whilst also being emotionally distressing for the individual member of staff.

Support in relation to these issues needs to be available for staff through supervision, as well as external sources of specialised support where required.

10. Further Reading

10.1 Relevant chapters

Mental Capacity

Deprivation of Liberty Safeguards

10.2 Relevant information

Dementia: assessment, management and support for people living with dementia and their carers (NICE)

Herbert Protocol (Metropolitan Police) A form for carers, family or friends of a vulnerable person can fill in which contains to help the police if the person goes missing