10.6 Working with Adults Living with Dementia (TSSP)

1. Introduction

As people get older, they sometimes find that loss of memory becomes problematic. It is normal for memory to be affected by age, stress, tiredness, menopause or certain illnesses and medications, but there may also be underlying medical reasons that may require investigation and treatment, including dementia.

The following statistics relate to dementia in the UK:

• there are an estimated 944,000 people with dementia;
• the number of people with dementia is predicted to rise to 1.1million by 2030, 1.4million by 2040 and will reach 1.6million by 2050;
• one in 14 people in the UK aged over 65 have dementia;
• the financial cost is £34.7 billion per annum;
• women are more likely than men to develop dementia in their lifetimes, partly due to the fact that women live longer than men.

(Alzheimer’s Society; Dementia Statistics Hub, Alzheimer’s Research UK).

2. What is Dementia?

Dementia is a common condition which is more likely to develop with age, usually occurring 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 includes 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, 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 they develop 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 can be different for each person. There are no treatments yet that can slow the progression or delay the onset of the diseases which cause dementia, but a number of treatments which are currently available on the NHS can help to reduce symptoms.

An adult who is experiencing a number of the symptoms related to dementia may find it difficult to keep being independent and may often 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, in the first instance 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 off. Common symptoms of Alzheimer’s disease and other forms of dementia include:

• memory loss – especially recent events, such as forgetting messages, remembering routes or names and asking questions repetitively;
• having increasing difficulty with everyday tasks and activities;
• becoming confused in places they don’t know / don’t 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 very 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 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, followed by them getting 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 the chapters on Mental Capacity, Deprivation of Liberty Safeguards and Equality, Diversity and Human Rights in a Safeguarding Context).

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

Whilst an adult with an early diagnosis of dementia may not require care and support services at first, they will inevitably do so as the disease progresses. Their carers may also require assessment and a support plan.

Some adults with dementia will be self-funders, when care and support is paid by them or a family member for example. They may not then want an assessment 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.

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 section).

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. Advance Care Planning

People can make some decisions 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.

8. Safeguarding Adults with Dementia

As discussed 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 about what is happening to them;
• they may not be able to manage their own financial affairs; if an unsuitable person takes this over for them, it gives them opportunity to steal 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 give in to people who are bossy and over-bearing;
• the adult may forget about the abuse that has happened and not tell anyone.

As the condition progresses and the adult gets worse, their ability to protect themselves  lessens and often disappears completely.

Where there are such safeguarding concerns, see Safeguarding Enquiries.

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 are important for both adults and their carers when managing the person’s symptoms.

This is particularly important considering the expected rise in the number of people who will be affected by dementia over the next 10 years.

Staff supervision sessions need to recognise the difficulties that working with adults with dementia can present for staff, 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 for these issues needs to be available for staff through supervision. as well as external sources of specialist support where required.