Dementia

Definition

Dementia is an umbrella term that describes a degenerative neurological disorder caused by diseases or injury to the brain. Although there are over 200 subtypes, there are four common types of dementia:
  • Alzheimer's
  • vascular
  • Lewy body
  • frontotemporal.
Weatherhead and Courtney ([280], p.114) state that ‘dementia is not a normal part of the ageing process, but almost all types of dementia are progressive and incurable’.

Related theory

The WHO ([286]) estimates that over 50 million people are living with dementia worldwide, and this number is predicted to rise exponentially to 152 million people in 2050. The Alzheimer's Society ([8]) estimates that there were 850,000 people living with dementia in the UK in 2015, with a related cost of £26 billion a year.
Although the risk of developing dementia increases as people age, dementia does not exclusively affect older people. Although it is rare, and can be difficult to diagnose, dementia can affect younger people: 40,000 people aged under 65 have a dementia diagnosis in the UK (Alzheimer's Society [9]).
Dementia can be caused by a number of illnesses and manifests as a decline in multiple areas of functioning, most notably a person's ability to think, retain information, reason and communicate (Young Dementia UK [293]). People living with dementia are twice as likely to be hospitalized as people with normal cognitive functioning (Parke et al. [219]). Studies suggest that one‐quarter of UK inpatient beds were occupied by people with dementia in 2009 (Alzheimer's Society [7]), and that figure will have risen in the years since then.
Delirium and depression are prevalent in older patients, and it can be difficult to make a differential diagnosis between these presentations and dementia. Due to the differences in the treatments for these conditions, it is essential that healthcare professionals are able to identify key signs and symptoms associated with all three conditions so that appropriate management can be provided (Polson and Croy [225]).

Evidence‐based approaches

De Vries ([58]) suggests that the ‘decline in communication ability for older people with dementia is usually progressive and gradual, with the condition affecting expressive and receptive language abilities’ (p.30). It is thought that those in the caring profession avoid communication with people who have dementia and this can have a negative impact on the person's experience and result in behaviour, which can be challenging (Jootun and McGhee [142]). People who have dementia frequently have word‐finding difficulties so supporting communication can include finding suitable tools, such as a communication book. The use of non‐verbal skills, such as simply allowing the person to point at what they want, can help in the communication process. It is important to engage with people with dementia and, although it may take more time, the results can be rewarding. Excluding or ignoring patients can leave them feeling frustrated and angry, therefore compromising their safety (Tonkins [269]).
The involvement of family and carers is important as they may have a greater understanding of the verbal and non‐verbal communication of the person with dementia. However, the involvement of family and carers should not exclude communication between the person with dementia and nurses; the person with dementia should be involved as much as possible in all communication relating to their care. As Jootun and McGhee ([142], p.41) suggest, it is important for nurses to demonstrate sensitivity and encourage the person to communicate in the way they are most able and prefer.
Baillie et al. ([15]) suggest that providing personal care to a person with dementia, if done sensitively, can help to develop the relationship between them and the nurse. However, it is important to consider what the person with dementia might be experiencing as their reality may not be the same as the nurse's. For example, the person with dementia may think they are at home and that the nurse is a family member.
There is a higher risk for patients with cognitive impairment (compared to those who do not have cognitive impairment) who are admitted into a hospital to have poorer health outcomes and be discharged into 24‐hour care. NICE ([211]) recommends that care plans for patients with dementia should promote and maintain the patient's independence in activities of daily living (such as mobility and personal care) due to the high risk of institutionalization and dependency on others. When writing care plans, the unique needs of people with dementia must be taken into consideration and addressed to ensure person‐centred care. Environmental factors, such as signage and a clear, clutter‐free bed space, should always be considered to ensure safety and promote independence (RCOT [235]).

Clinical governance

The principles of the Mental Capacity Act ([176]) apply to all patients and the first principle of the act, the presumption of capacity, also applies to patients who have dementia. A person's capacity is decision specific and, as such, a person with dementia should have the ability to make decisions as long as they can show that they understand the decision they are making and the risks associated with that decision. If a patient with dementia declines care or treatment, they should be treated as an adult with capacity unless an assessment of capacity has indicated they lack capacity to make the decision. If this is the case, a best interest decision must be made in consultation with the patient's family. Where the person has no family and the decision relates to medical treatment or about where they will be living, a referral must be made to the Independent Mental Capacity Advocate.
For people with dementia who are in hospital or a care setting, consideration needs to be given to the Deprivation of Liberty Safeguards (DoLS). If a patient is unable to consent to being in hospital and there are restrictions on their liberty, they are not free to leave if they wish to, so they may be being deprived of their liberty.

Pre‐procedural considerations

Equipment

People who have dementia may only need a nurse's effective communication skills. However, tools such as communication cards or books that allow patients to point to images (e.g. toilet, shower, food and drink) may be very useful.

Assessment

Assessing the pain of a person who has dementia and communication difficulties can be challenging. Using non‐verbal pain assessment tools should ensure that the patient's pain is appropriately assessed.
Table 5.20  Environmental considerations for the assessment of people with dementia
PrincipleRationale
Ensure that there are recognizable environments and clear signage to identifiable rooms, such as toilets, bathrooms and kitchens.Visual cues help patients with dementia to navigate their environment, which reduces disorientation and promotes independence (NICE [211], C ).
Provide orientation cues including a calendar and a working clock with date, time and season.Orientation cues can help to reduce confusion and agitation and thus be reassuring. It may also help to establish night and day routines to reduce sun‐downing (behavioural change in individuals with dementia in the evening). E
Implement effective lighting and a clutter‐free environment.To promote patient safety (RCOT [235]). A clutter‐free environment can promote independence by reducing falls risks and distractions. C
Use contrasting colours.This may improve visual–spatial awareness and orientation (RCOT [235]), although bright colours can also be confusing. C
Install stimulating murals, gardens and therapeutic rooms (which may contain personalized photos as well as rummage and activity boxes; see Figure 5.17).This can improve stimulation and provide a calm, therapeutic environment (NICE [211]), as well as a place to talk or reminisce. C
Minimize patient relocation and ensure continuity and stability.Avoid moving the patient from ward to ward unless medically essential as this will increase disorientation and may lead to deterioration in abilities (NICE [211]). A side room is preferable, with continuity of care provider where possible. C
Establish a routine at the individual's pace and encourage independence wherever possible.To maintain the maximum potential for independence for as long as possible to avoid deterioration (NICE [211], C ).
Table 5.21  Supporting communication for people with dementia
PrincipleRationale
Be aware of what the patient's communication needs may be.Knowing the patient's preferred style of communication or communication needs will enhance the patient's and nurse's experience. E
Be aware of the patient's reality, orientating them and if necessary reinforcing this throughout the care intervention.To give the patient the best possible chance of understanding the context. E
Consider whether the patient has other communication issues.The patient may have dementia but they may also have a hearing impairment and so they may understand what is being said but not be able to hear what is being asked. E
Consider the environment and its impact on the patient.The patient may be distracted by the noise of a busy unit. Finding a quieter space may help the communication process. E
Avoid reinforcing a patient's reality when it is not real, and avoid telling them things that are not true.Telling a patient that a loved one, such as a parent or spouse, has been dead for some years may be very distressing for them but so might telling them they are at home and they will see the person later. It is better to change the subject and orientate the patient to where they are. E
Patients with dementia may need constant reorientation.Due to anxiety and poor short‐term memory, patients with dementia may forget what they have been told very quickly; for instance, when a nurse is assisting with personal care or changing a dressing, the patient may need to be reminded where they are. E
Learn about the patient's past and occupation, e.g. via life story work or memory books.It is not uncommon for patients with dementia to behave as they did when they were in employment; for instance, a cleaner may want to go around the ward cleaning. These behaviours can give the patient a sense of value but can present risks. If a nurse understands a patient's past, behaviours that are not congruent with their current environment and context can make more sense. E
Be aware of your body language and non‐verbal communication; be open and approachable and be on the patient's level.Patients with dementia may misinterpret non‐verbal communication and this can cause them to become distressed or angry. E
Use short, simple sentences and avoid providing too many choices.Patients with dementia may not recall everything that is being said, so shorter sentences will help. Offering two choices at a time might be better than providing a long list and it can be helpful to refer to pre‐existing information about the patient's preferences. E
It is better to use closed questions (such as ‘Would you like a cup of tea?) rather than open questions (such as ‘What drink would you like?’).Open questions can make it difficult for the person to respond, as they may struggle to remember the words they need. E
If a person with dementia is struggling to find a word, help them find a way around it.People with dementia can become very frustrated when trying to find a word and may decide to withdraw from the conversation. E
When giving instructions to a patient with dementia, give one instruction at a time.To help maximize the person's independence. Supporting them to do a task by helping them with the sequencing is enabling. E
Avoid interruption when a person with dementia is speaking.Interrupting the person while they are speaking may result in them losing track of what they wanted to say and can cause frustration. E
Source: Adapted from Dementia UK ([64]), Vasse et al. ([276]).