See also the service’s local police force Herbert Protocol (see Metropolitan Police’s Herbert Protocol as an example). It is a risk reduction tool to be used should an adult with dementia go missing. A form, completed in advance, should be passed to the police if the person is reported missing.
March 2020: Section 1, Introduction was amended to update the statistics and links.
- 1. Introduction
- 2. What is Dementia?
- 3. Different Types of Dementia
- 4. Symptoms in Later Stage Dementia
- 5. Adults with Care and Support Needs
- 6. Carers
- 7. Making Advanced Decisions
- 8. Safeguarding Adults with Dementia
- 9. Training and Supervision
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, 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 (time periods and geographical areas may vary as sources are different research reports):
- there are an estimated 850,000 people in the UK with dementia, of which 42,325 are younger people (under 65 years in 2013) and 25,000 from black and minority ethnic groups (2011 figures, expected to rise to 50,000 by 2026) and two thirds are women;
- 537, 097 have been diagnosed with dementia in the UK;
- there will be an estimated 1 million people with dementia by 2025;
- the proportion of people with dementia doubles for every five-year age group;
- one in 14 people aged over 65 have dementia;
- there were 87,199 deaths in the over 75 age group in England and Wales 2017 which were directly attributable to dementia;
- the financial cost is £26 billion per annum. (Alzheimers Society; Dementia Statistics Hub).
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 (a group of related symptoms) associated with an ongoing decline of brain function. It affects:
- memory loss;
- thinking speed;
- mental agility;
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 (emotionally labile), not having any interest in things and losing interest in past activities. Social situations may become more difficult as their personality changes.
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.
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 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, which changes 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 tasks and activities that they need to organise and plan;
- 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 their 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 no notice them or take them seriously for quite a while.
3.2 Vascular dementia
Vascular dementia is caused if the oxygen supply to the brain fails and brain cells die as a result. This can either be suddenly which 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 making them seem 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 person is probably not able to care for themselves and needs constant care and attention.
- Memory symptoms: adults may not recognise close family and friends, remember where they live, know where they are, 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 eating or swallowing difficulties are common. This may lead to them choking, which may result in 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 Mental Capacity chapter and Equality, Diversity and Human Rights chapter).
5. Adults with Care and Support Needs
Getting a dementia diagnosis 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 Promoting Wellbeing chapter and Preventing, Reducing and Delaying Needs chapter).
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 a local authority 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 need 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.
Whether or not the adult has a local authority assessment and care and support plan or not, service providers are often involved in caring for an adult with dementia, either in their own home or in a residential or nursing home.
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).
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 Advanced Decisions
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. See Making Advance Decisions chapter.
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 experiencing, or at risk of 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, Icf 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 takes hold of the adult and gets worse, their ability to protect themselves lessens and often disappears completely.
Where there are such concerns, the local Safeguarding Adults Board procedures should be followed (see Safeguarding Adults from Abuse and Neglect).
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 in an effort to offer care and support to adults and carers, whilst also being emotionally distressing for the individual member of staff.
Support for these issues needs to be available for staff through supervision and external sources where required.