Mental Capacity

Deprivation of Liberty Safeguards


Dementia: independence and wellbeing (NICE)

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


Dementia and the Herbert Protocol – Safe and Found (Leicestershire Police)

March 2019: This chapter has been amended to add a link to Leicestershire Police’s Herbert Protocol, which provides information about what to do when someone with dementia goes missing. A link was also added to Dementia: assessment, management and support for people living with dementia and their carers published by NICE.

1. Introduction

As people get older, they sometimes find that loss of memory becomes problematic. Whilst it is normal for memory to be affected by a number of different factors including age, increased levels of stress, tiredness, or certain illnesses and medications, it may be that there are underlying medical reasons that may require investigation and treatment, including dementia.

The following statistics relate to dementia in the UK:

  • there are 850,000 people with dementia, of which 40,000 are younger people and 25,000 from black and minority ethnic groups and two thirds are women;
  • there will be 1 million people with dementia by 2025;
  • the proportion of people with dementia doubles for every five-year age group;
  • one in six people aged 80 and over have dementia;
  • 60,000 deaths a year are directly attributable to dementia;
  • the financial cost is £26 billion per annum;
  • 80 per cent of people living in care homes have a form of dementia or severe memory problems;
  • two thirds of people with dementia live in the community while one third live in a care home;
  • only 44% of people with dementia in England, Wales and Northern Ireland receive a diagnosis. (Statistics, Alzheimer’s Society)

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 (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 includes losing the ability to empathise, experiencing auditory or visual hallucinations, becoming emotionally labile and / or apathetic, losing interest in past activities. Social situations may become more difficult as aspects of their personality change. Where there are concerns that the adult no longer has mental capacity, safeguards should be put in place to ensure decisions are made in their best interests (see also Mental Capacity).

The speed at which symptoms worsen and the way symptoms develop depends on the cause of the dementia, as well as the person’s overall health. This means that the symptoms, rate of progress and experience of dementia varies greatly for different people.

An adult who is experiencing a number of the above symptoms related to dementia may find it difficult to maintain their independence, therefore often requiring help from family or friends, including help with decision making.

If a person – or their family or friends – is worried that they may be developing dementia, they should seek medical advice.  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 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 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 tasks and activities that require organisation and planning;
  • becoming confused in unfamiliar environments;
  • difficulty finding the right words;
  • difficulty with numbers and/or handling money in shops;
  • changes in personality and mood;
  • depression.

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 if the oxygen supply to the brain fails and brain cells die as a result. The symptoms of vascular dementia can occur either suddenly, following a stroke, or over time, through a series of small strokes. The onset of symptoms can be quite sudden 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 making them seem 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 very severe. In the later stages, the person is likely to neglect their own health and require 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 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: loss of appetite, eating or swallowing difficulties are common. This may lead to choking with subsequent chest infections. Weight loss associated with such problems is therefore common.

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 Mental Capacity and Deprivation of Liberty Safeguards).

5. Adults with Care and Support Needs

Early diagnosis and receiving the right treatment, care and support are key to some of the core concepts of the Care Act 2014 (see Promoting Wellbeing and Preventing, Reducing and Delaying Needs).

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). Their carers may also require assessment and a support plan (see Assessment, Section 6, 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).

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).

The carer’s support plan review should include discussions about the longer term future for the adult and their carer, and staff should broach the subject of what may happen if there comes a time when the carer can no longer care for the adult concerned.

Both the adult’s care and support plan and the carer’s support plan should include interventions for responding should the carer be no longer able to care on either a short term (illness for example) or permanent basis.

7. Making Advanced Decisions

People may make a number of decisions 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

8. Safeguarding Adults with Dementia

As Section 4, Symptoms in Later Stage Dementia above outlines, adults with progressive dementia will become entirely dependent on others for their care and support needs to be met. This may result in some people experiencing or being at risk of abuse or neglect.

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

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 in an effort to offer care and support to adults and carers, 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, and external sources where required.