11.3 Working with Adults 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 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 to1.4m by 2040;
• one in 14 people aged over 65 have dementia. This rises to one in six for those 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 per year.

Source (Alzheimer’s Society; Dementia Statistics Hub).

2. What is Dementia?

Dementia is a common condition which is more likely to develop 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. It affects:

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

An adult with dementia may experience different mental changes. This can include losing empathy with other people, hearing or seeing things that are not real (auditory or visual hallucinations), becoming up and down in their mood (being less emotionally stable), not having any interest in things and losing interest in past activities. Social situations may become more difficult as their personality changes.

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

The speed at which a person’s symptoms get worse and the way they 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 which results in brain cells dying. 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 difficulty with everyday tasks and activities;
• becoming confused in places they do not know / do not know well;
• having difficulty finding the right words;
• having difficulty with numbers and / or paying in shops, particularly with cash;
• changes in personality and mood;
• feeling depressed.

Early symptoms of dementia (sometimes called cognitive impairment) are often mild and may get worse very gradually. This means that some people – and their family and friends – do not 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 such as after a stroke, or over time as a result of a number of small strokes. Symptoms 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 weakness or paralysis on one side of their body.

3.3 Dementia with Lewy bodies

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

• periods of being awake or drowsy, or fluctuating levels of confusion;
• seeing things that are not there (visual hallucinations);
• becoming slower in their way they move.

3.4 Frontotemporal dementia

In this type of dementia, damage usually occurs in the front part of the brain, so an adult’s personality and behaviour are more affected to start with than their 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 behave in a way that is out of character for them, such as making inappropriate comments. Some adults also experience 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 bits of information or 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 may be mostly in a bed and / or a chair.
• Incontinence: urinary incontinence is common (wetting), and some people will also experience faecal (bowel) incontinence.
• Eating, appetite and weight: losing their appetite and having difficulties eating or swallowing are common. This may lead to choking, an increased risk of chest infections. People with these problems may lose weight as well.

As well as issues of mental capacity, care should be taken to make sure the adult’s human rights are not breached if they lack capacity to consent to care and treatment (see Mental Capacity and Best Interests and Deprivation of Liberty Safeguards chapters).

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 first shows symptoms, are some of the key points in the Care Act 2014 (see Promoting Wellbeing and Preventing, Reducing and Delaying Needs chapters).

Whilst 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, Section 5, Carers’ Assessment chapter).

When the time comes that they do need care and support services, some adults with dementia will be self-funders, that is they or a family member, for example, will pay for their care. They may not then want an assessment carried out by the local authority.

Where an adult is assessed by the local authority, a care and support plan should be developed with them, to make sure that they are able to state what their needs are and what they want to happen wherever possible, as well as those of their carer (see Care and Support Planning chapter).

6. Carers

Dementia is a very distressing illness for the person’s family and friends, as well as the person themselves. They often see the personality and abilities of their loved one change so much, sometimes to the point of being unrecognisable to how they were before. For couples who have been together a long time, for example, it is very upsetting when their partner or spouse no longer recognises them, or the person physically or verbally abuses them.

When adults with dementia are being looked after at home by family or friends, it is very important that they receive all the multi-agency support needed to be able to best care for them for as long as they are able. This should include an assessment by the local authority if they wish, and the development of a support plan for the carer to put in place to support them to continue caring for their loved one, if this is what they wish to do. 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 can make some decisions in advance to make sure their wishes and views are respected should they lose mental capacity in the future, as a result of dementia for example. This includes decisions about their 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

Common symptoms for adults with dementia include memory loss, disorientation, confusion, communication difficulties, behavioural issues, low mood and cognitive impairment. These factors can increase the risk of an adult experiencing abuse and neglect in the following ways:

• 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.

Where there are safeguarding concerns, the Calderdale Safeguarding Adults Board procedures should be followed (see Adult Safeguarding chapter).

9. Missing Episodes

Almost three quarters of adults with dementia will go missing at least once (see Dementia UK). Issues with memory loss and problem-solving may mean they become lost more easily, or confusion can make even familiar places feel strange. Some people with dementia want to spend time walking and repeatedly leave the house. This can increase the risk of them going missing.

9.1 Technology

If there are concerns about an adult with dementia going missing, technology may be able to help to keep them safe. For example,

• door sensors that alert family, friends or carers if an external door is opened;
• a boundary alarm that alerts friends or family if the person leaves a certain area;
• a wearable alarm the adult can use if they realise they are lost;
• a tracking or GPS device in a watch, key ring or pendant which lets friends, family or police se the adult’s location.

Mobile phones

If the adult has a mobile phone, family members or carers can:

• add emergency information to their phone which someone who finds them can access from the lock screen (Apple iPhone, Android phones);
• set up tracking to allow family, friends and police to see their location (Apple iPhone, Android phones)

Please note:  the use of any technologies should be balanced with a person’s right to freedom and privacy. It is important to choose the least restrictive option to keep a person safe and to respect their rights and freedoms.

9.2 The Herbert Protocol

The Herbert Protocol is a national scheme that provides the police and other emergency services with essential information if an adult with dementia goes missing.

Carers, family or friends of an adult with dementia, or the person themselves, can fill in a Herbert Protocol form in advance. Forms can be completed for adults who live at home or in a care home. The information contained in the form provides details about the person, their past, their habits and places they socialised and worked, which can help the police focus their search activity if a person with dementia goes missing.

For more information see: Herbert Protocol (regarding vulnerable people who go missing) West Yorkshire Police.