Guidance for NHS continuing healthcare assessors: Evaluating the emotional and psychological needs for people in the later stages of dementia

Guidance for NHS continuing

healthcare assessors

Evaluating emotional and psychological needs

for people in the later stages of dementia

Document purpose: This guidance is based on research conducted by the

Association for Dementia Studies at the University of Worcester. The research

involved a number of key phases including a review of the relevant literature,

practice experience from CHC panels, Alzheimer’s Society and family carers as

well as feedback from nurses who do not have specialist dementia knowledge.

Title: Guidance for NHS continuing healthcare assessors: Evaluating emotional

and psychological needs for people in the later stages of dementia

ISBN 978-1-906647-33-9

Publication date: March 2015

Target audiences: NHS continuing healthcare assessors including health

professionals working in hospitals, staff working in care homes and in the community

Acknowledgements: The authors would like to thank Professor Claire Surr, Leeds

Beckett University, for her informative literature review on assessing and supporting

the emotional needs of people with advanced dementia and Professor Clive Ballard,

Kings College London, for his advice and support with this important area.

Thanks also to Jim Ledwidge (Independent Consultant and Trainer) for his advice

around CHC assessments and for signposting some key information.

Thanks go to all the staff in Worcestershire Health and Care NHS Trust and

Wye Valley NHS Trust, particularly Greg Dean for helping to organise the interviews

with nurse assessors and to all the nurse assessors themselves. Our thanks also to

Jane Nicol, Senior Lecturer in the Institute of Health and Society at the University

of Worcester, for helping to organise the focus groups, and to all the student nurses

who participated in the focus groups.

Finally, thanks to Alzheimer’s Society CHC group, particularly Samantha Sharp, Laura

Cook and Tina Newton, for their support in this often neglected area of assessment.

Authors: Dawn Brooker, Sarah Milosevic, Heather Yemm

Contact: Association for Dementia Studies

University of Worcester

Henwick Grove

Worcester WR2 6AJ

Tel: 01905 542296

Email: dement[email protected]

Publisher: © Alzheimer’s Society 2015

any medium without the written permission of the publisher, except for personal or educational use.

Commercial use is prohibited.

Contents

1 Introduction 2

The National Framework 3

The 12 care domains 5

Establishing a primary health need 6

2 The impact of dementia 8

Psychological and emotional needs 10

3 Questions to consider 13

Indicators of depressed mood 14

Indicators of hallucinations 15

Indicators of anxiety and distress 16

Indicators of responsiveness to reassurance 17

4 Making the assessment 18

Communicating effectively 19

Evidence from others who know the person well 21

Other forms of evidence 22

Medication records 22

5 Recording the correct level 24

References 26

Appendix 1: Summarising the evidence 28

Appendix 2: Tools/scales 30

Introduction

Under the National Framework for NHS continuing

healthcare (CHC) and NHS-funded nursing care,

assessors have a duty to evaluate the needs of a wide

range of people in order to determine whether any

aspect of their care constitutes a ‘primary health

need’. This guidance is designed to help CHC assessors

evaluate the emotional and psychological needs of

people in the later stages of dementia.

It should be used with the National Framework for NHS continuing

healthcare and NHS-funded nursing care (which includes the

Decision Support Tool) provided by the NHS continuing healthcare

policy team, available at:

www.gov.uk/government/publications/national-framework-for-

nhs-continuing-healthcare-and-nhs-funded-nursing-care

The National Framework

All CHC assessors should be familiar with the National Framework.

In particular, the following statements outline key principles of the

Framework to remember:

• Professional judgement should be exercised in all cases to ensure

the individual’s overall level of need is correctly determined.

The tool is to aid decision-making in terms of whether the nature,

complexity, intensity or unpredictability of a person’s needs are

such that the individual has a primary health need.

• The process of assessment and decision-making should be person-

centred. This means placing the individual, their perception of their

support needs, and their preferred models of support at the heart

of the assessment and care-planning process. When deciding on

how their needs are met, the individual’s wishes and expectations

of how and where the care is delivered, and how their personal

information is shared, should be documented and taken into

account, along with the risks of different types of provision and

fairness of access to resources.

• The decision-making rationale should not marginalise a need just

because it is successfully managed: well-managed needs are still

needs. Only where the successful management of a healthcare

need has permanently reduced or removed an ongoing need,

such that the active management of this need is reduced or

no longer required, will this have a bearing on NHS continuing

healthcare eligibility.

The National Framework recommends that the Decision Support

Tool (DST) should be completed by a multidisciplinary team, and it is

worth noting that the National Framework defines a multidisciplinary

team as:

• A team of at least two professionals, usually from both the health

and social care disciplines. It does not refer only to an existing

multidisciplinary team, such as an ongoing team based in a

hospital ward. It should include those who have an up-to-date

knowledge of the individual’s needs, potential and aspirations.

The 12 care domains

The CHC assessment is divided into 12 care domains:

• behaviour

• cognition

• psychological and emotional needs

• communication

• mobility

• nutrition

• continence

• skin integrity (including wounds, ulcers, tissue viability)

• breathing

• drug therapies and medication: symptom control

• altered states of consciousness

• other significant care needs to be taken into consideration.

As a CHC assessor you need to decide the level of need under each

domain, in order to make a recommendation as to whether the

individual is entitled to NHS continuing healthcare.

Your assessment involves judgement on the nature, intensity,

complexity and unpredictability of the individual’s needs in each

of the 12 domains. If the person you are assessing has dementia,

this can have an impact on each of these domains in terms of

complicating the complexity and intensity of need.

If the degree of dementia is moderate or severe it is likely that behaviour,

cognition, psychological/emotional needs and communication will be

compromised and you will need to assess these directly.

If the person you are assessing has co-morbidities in addition to

dementia, then their needs under mobility, nutrition, continence,

tissue viability, breathing, drug therapy and consciousness can be

further complicated by interaction with symptoms of dementia.

All domains that are affected should be recorded separately.

Establishing a primary health need

Domains are judged on a six point scale of need:

• no need

• low need

• medium need

• high need

• severe need

• priority need.

However, not all domains are rated across the full range of options.

The domains of behaviour, breathing, drug therapy and altered

states of consciousness include levels of need that are so great that

they could reach the ‘priority’ level (which would indicate a primary

health need) on their own.

The needs in other domains are not considered ever to be at a

level on their own that could trigger eligibility. Needs in relation to

cognition, psychological/emotional needs, communication, mobility,

nutrition, continence and tissue viability can form part of a range of

needs which taken together could constitute a primary health need.

If a need is being well-managed, for example where psychological

interventions are meeting behavioural or emotional needs and

therefore minimising their impact, then this should still be recorded

at the level of need that would be present if the ongoing intervention

was withdrawn.

A recommendation of eligibility to NHS continuing healthcare

would be expected when there is:

• an identified priority need in any one of the four domains

that carry this level (behaviour, breathing, drug therapy

and consciousness)

• a total of two or more incidences of identified severe needs

of the seven domains that carry this level (behaviour, cognition,

mobility, nutrition, skin, breathing and drug therapy).

The domains of psychological/emotional needs, communication

and continence are only ever considered to indicate a high level

of need (not priority or severe). These would only contribute to a

primary health need if they occurred alongside other needs that

were recorded as priority or severe or if there was a combination

of a number of domains where needs were identified as high and/

or moderate needs.

A combination of needs, which could include even a combination

of high and/or moderate levels of need, may indicate a primary

health need.

In deciding whether a recommendation of eligibility for NHS

continuing healthcare should be made, the overall need and the

interactions between needs are taken into account. Where there

is a combination of needs in different care domains, evidence

from risk assessments is likely to be important.

All judgements need to be based on what the evidence indicates

about the nature and/or complexity and/or intensity and/or

unpredictability of the individual’s needs. Evidence suggesting a

strong need in just one of these aspects (nature, complexity, intensity

or unpredictability) is enough to indicate a primary health need.

If you are in any doubt as to the level of need that should be

recorded, or you have any concerns, speak with your colleagues

in order to obtain appropriate advice and assistance.

The impact of

dementia

Assessing the needs of someone in the later stages of

dementia is not an easy task, particularly when you

have not known the person over a prolonged time

period. As a CHC assessor you are asked to ensure

that the individual you are assessing and their carers

or representatives understand and agree to what has

been written.

If you are being asked to assess a person living with dementia in a

care home it is likely (although not always the case) that the person

you are assessing will not be able to give you a first-hand account of

their needs. Often the person you are assessing may lack the mental

capacity to understand and agree to your assessment.

You will need to use your observation skills and weigh up evidence

from the person themselves, carers, staff and previous assessments

and records. You will then have to use your professional judgement in

order to come to a decision. This guide is based on best practice and

evidence in order to help you with your decisions.

Psychological and emotional needs

Understanding the psychological and emotional needs of people

with dementia can be difficult. Research into this area is increasing,

however there are some misconceptions that are commonplace.

Remember the following key facts:

Lack of capacity to make informed decisions does not mean

lack of capacity to experience distress

Research suggests that people living with advanced dementia have

a preserved capacity to process emotions, and they are able to

recognise expressed emotions in others and react to others on an

emotional level (Tariot, 2003). Individuals who lack capacity may be

unable to make informed decisions, and may lack insight into their

own condition, but this does not mean that they are incapable of

experiencing emotional wellbeing or illbeing.

People with advanced dementia feel pain and distress but they

may have difficulty telling you about this directly

It is important not to make assumptions about an individual’s

emotional and psychological needs based on the fact that they have

dementia. People in the later stages of dementia and/or with high

levels of cognitive impairment are still able to experience depression

and distress, regardless of whether they are able to communicate

this verbally.

Emotional distress may be communicated as behavioural

disturbance

Around 90 per cent of people with dementia experience what is

known as behavioural and psychological symptoms of dementia

(BPSD). Sometimes these are also called neuropsychiatric symptoms

(NPS) or referred to as challenging behaviour or behaviours

that challenge. These behaviours include, but are not limited

to, withdrawal (Kverno et al, 2008), aggression and agitation

(Cohen-Mansfield et al, 2012).

It is important to remember that these behaviours can be an

expression of unmet emotional needs or symptomatic of a general

health problem. For example, the person may be in physical

discomfort due to hunger or pain (Testad et al, 2010). It is essential

that the underlying cause of BPSD is explored, by investigating the

areas listed in section 3, Questions to consider (see pages 14–17),

or seeking advice and input from colleagues and family members,

where appropriate. This will help you to identify whether these

behaviours are the result of emotional distress, or another factor or

combination of factors.

People in the later stages of dementia do not become

withdrawn and disengaged just because they have

cognitive impairment

It is important that disengagement is not dismissed simply as a result

of cognitive impairment. Many people with advanced dementia

may become withdrawn or disengaged as a behavioural response to

distress (Kverno et al, 2008), and thus withdrawal could be a key sign

that someone is experiencing depression or anxiety. If an individual

appears withdrawn, it is essential that a thorough investigation is

conducted into the potential cause of the withdrawal, using the

same methods outlined above – considering the questions listed

in section 3 (see pages 14–17) or talking to colleagues and family

members, where appropriate. Don’t simply dismiss the issue as an

inevitable part of cognitive impairment.

Depression can occur for the first time at any age

Depression can occur at any age, and a significant number of people

experience depression for the first time in later life. Life stresses that

are inherent in growing older have been implicated in increasing

vulnerability to depression (Alexopoulos, 2005). It is therefore

important that people with dementia who exhibit symptoms

associated with depression are assessed appropriately in order to

ensure that depression does not go undiagnosed simply because

the individual has no documented past history of depression.

Depression is common in dementia

Studies have shown that depression commonly occurs in people with

all degrees of cognitive impairment (Enache et al, 2011; Volicer et

al, 2012) with an estimated prevalence of 17–35 per cent for people

with advanced dementia (Boller et al, 2002). People with dementia

who experience depression are more likely to express distressed

behaviours, including BPSD (Prado-Jean et al, 2010), as the presence

of behaviours that challenge could be a sign of depression.

It is important to recognise that individuals with any type of

dementia and at any stage of the condition are at risk of depression

(Enache et al, 2011; Volicer et al, 2012), and so it is essential that

appropriate assessments are undertaken to ensure that depression is

not overlooked for individuals with advanced dementia.

Questions to consider

There are a number of key questions that could and

should be considered when assessing an individual

with dementia, particularly if they are unable to

communicate verbally.

Below is a list of prompts that may help you to assess an individual

with dementia. This is by no means an exhaustive list and you may

find that there are additional questions and queries that you need

to raise when completing an assessment.

These prompts are useful to consider at all stages of the assessment,

including in discussions with the person with dementia, family

members and care staff and when investigating written records

and notes. Some of the prompt questions listed have been adapted

from areas identified in other sources. Where this is the case, the

author or article is indicated below.

Indicators of depressed mood

If the person is very withdrawn and apathetic it may be that

they have an underlying depression or physical condition that is

contributing to this. The following questions can help to assess

whether this is the case and whether the care team have considered

this as an explanation.

• Has there been a change in the person’s normal sleeping or

eating routines (eg reduced or increased appetite, insomnia

or over-sleeping)?

• Has the person lost weight?

• Does the person get pleasure from anything?

• Does the person appear apathetic?

• Does the person show appropriate facial expressions in

response to stimuli (eg do they smile back at a friendly face)?

• Has an appropriate scale for assessing depression in people

with dementia been completed? (Examples of scales are listed

in Appendix 2)

• Has the person got physical health problems that could be

causing sleep disturbance, weight loss or apathy?

• Is the person being prescribed medication that could be

causing appetite and sleep disturbance?

Indicators of hallucinations

If the person is perplexed or agitated it may be that they are

experiencing hallucinations or disturbed perceptions or thoughts.

This may be triggered by the neurological impairment associated

with the dementia or by an environmental cue that is being

misinterpreted. It may also be because of an underlying physical

condition causing delirium. The following questions can help to

assess whether this is the case and whether the care team has

considered this as an explanation.

• Is there any evidence of auditory or visual hallucinations?

• If yes, how do these hallucinations present:

• Is the person grabbing or picking at things in the air, or trying

to pick things up from the floor or other surfaces that aren’t

really there?

• Does the person appear to be listening or talking to somebody

that isn’t there?

• Does the person appear to be looking at somebody who

isn’t there?

• How often do hallucinations occur? Do they occur at particular

times of the day or night?

• How long do the hallucinations last for? Are the hallucinations

responsive to changes in the physical environment, such as

changes in lighting?

• What is the level of distress caused by the hallucination?

• Can the person be reassured or distracted from distress caused

by the hallucinations?

• Has the person recently experienced a period of physical ill-health

(infection, high temperature) that could have triggered hallucinations?

• Has the person got appropriate and functioning spectacles

and hearing aids?

• Is the person being prescribed medication that could be

causing visual disturbance?

Indicators of anxiety and distress

If the person is often anxious or distressed there may be a pattern

that can help the care team to understand the underlying cause

of the distress. Look out for triggers such as environmental factors

or the actions of staff or residents that are misinterpreted. These

errors could be caused by neurological impairment or an underlying

physical condition. The following questions can help to assess

whether this is the case and whether the care team have considered

this as an explanation.

• Does the individual show any signs of anxiety or distress? If yes:

• How long do periods of anxiety/distress last?

• How often do periods of anxiety/distress occur?

• How severe are the periods of anxiety/distress?

(E-learning for Healthcare, 2012)

• How does the person present during periods of anxiety/distress?

• Does the person shout or call out? If yes:

• How often?

• What do they call out?

• Does the person exhibit facial expressions or body language

that suggest anxiety or distress (eg turning away, shifting

uncomfortably, reaching out for physical contact from a trusted

family member or other individual)?

• Is it likely that the cause of the distress might be untreated pain?

Indicators of responsiveness to reassurance

It is important to assess how the team supports the emotional

wellbeing of residents. Skilled care can make a big difference to the

level of distress people will experience, so much so that sometimes the

actual distress is very short-lived. However, if skilled care is not in place

the person may well revert to longer periods of distress. Consider the

following prompts to help assess this.

• How does the individual react to their surroundings?

• Does the individual participate in daily activities and care planning?

(E-learning for Healthcare, 2012)

• If the person becomes distressed, how do staff react?

• What intervention does the person need when they

become distressed?

• Is there a plan of care in place to manage disturbed mood/

hallucinations or distress?

• Does this have an impact on the person’s behaviour?

• Are there any triggers that can precede a period of anxiety/

distress (eg does the person become distressed when family

or friend visitors leave)?

• Does the individual respond to reassurance? (E-learning for

Healthcare, 2012)

• If the individual responds to reassurance, how long does it take

to reassure the person until they are calm and settled?

When assessing the psychological and emotional needs of a person

with dementia, it is important to consider the environment that

they are in, as this may contribute to their symptoms. For example,

someone could feel disorientated and distressed in a hospital setting

but this distress may be alleviated when they are in a more familiar

environment to them.

Making

the assessment

In accordance with the National Framework, the

person you are assessing, along with their perceived

support needs and preferences, should be at the heart

of the assessment process.

You should meet them first to try to gain their consent to complete

the assessment. If you are unsure whether the person has capacity

to give their consent, this should be determined using the Mental

Capacity Act 2005 and the associated code of practice. You will need

to record how the person with dementia (or their representative)

contributed to the assessment and, if they could not be involved,

why this was.

It is important for you to spend some time with the person and

observe them yourself. This may help to verify or clarify comments

from care staff or family members and notes in care plans. If you

can, it is a good idea to arrange multiple assessment visits and spend

time with the person at different times of the day during different

activities. This can be particularly useful in assessing whether the

psychological and emotional needs are responsive to reassurance

or different approaches.

Communicating effectively

When assessing someone with significant cognitive disability you

should ensure that your non-verbal communication conveys warmth

and consideration. If your body language or facial expression shows

annoyance or scrutiny, this is what a person with dementia will notice,

even if the words you are using express something very different.

Piecing together fragmented speech and summarising what you

have heard back to the person with dementia can be helpful to assist

with understanding.

When someone is unable to communicate using language, there

is a reliance on non-verbal communication such as touch, holding,

stroking, eye contact and smiles to help the person feel at ease

with your presence.

Pay careful attention to the behaviour of the person with dementia

to assess how the person is feeling. You may be able to pick up on

non-verbal indicators that can be immensely helpful when assessing

an individual’s emotional and psychological needs.

Some non-verbal indicators of emotional distress are listed below.

Many of these are identified in the article Difficulties in identifying

distress and its causes in people with severe communication problems

(Regnard et al, 2003):

• changes in breathing patterns (particularly an increased rate

of breathing or unusually noisy breathing)

• body tension

• fidgeting

• repetitive vocalisation

• crying

• searching for family members to seek comfort

• wringing hands or squeezing a blanket or other object

• facial expression (eg grimacing, wide eyes, clenching teeth etc).

On the other hand, the following may be signs of emotional and

psychological wellbeing:

• relaxed open posture

• social responsiveness

• signs of pleasure at other people and surroundings

• initiation of contact, seeking eye contact, smiling at others

• singing, humming along to music

• joining in with activities, approaching other people

• sense of humour, laughter.

Evidence from others who know the person well

Family members

Family members can often be one of the best sources of information,

as they know the person’s past history and personality well. It can

be useful to try and talk to the person and family members separately,

as it may be the case that family members often don’t give a full

picture of what’s going on because they don’t want to upset the

person by giving their opinion and observations in front of them.

Additionally, the person themselves may not want to comment

on certain things (such as negative psychological and emotional

symptoms that they are experiencing) because they don’t want to

upset or worry their family.

However, this is not to say that there are not potential benefits in

meeting with the family member and person together. It may be

helpful to see how the individual mood is when their family is present

and it may be that the person is more open or feels more comfortable

to discuss things with the support of their family.

Care staff

Obtaining the observations of a variety of care staff involved can

be very helpful. Care assistants and activity co-ordinators may have

had more opportunity than nursing staff to spend time with the

person and thus they may be able to offer more insight into how

they are on a day-to-day basis. For example, care staff may be able

to offer insight into whether the person can get pleasure from things,

potential triggers for any periods of distress, or whether the individual

appears to be constantly worried, frightened or upset.

When asking other professionals for their opinions about the needs of

the individual, it is important to try and obtain the views of staff who

have spent a significant amount of time with the person, and also to

gain multiple perspectives, where possible.

Other forms of evidence

As well as speaking to the person with dementia themselves,

professional carers and family members, there are a number of

sources that can provide evidence in order to help with an assessment

of psychological and emotional needs. However, it is important to

note that assessments should be based on accurate and up-to-date

information. Care plans and patient notes that are outdated may

not be a reliable source of information. It is important to consider

the quality, reliability and validity of every source of evidence that

is explored.

Past history

In some instances, people who have had long-standing mental

health problems may be experiencing these again in the context of

dementia. Look for any records that the person with dementia has

previously experienced:

• depression

• anxiety

• psychosis

• admissions to hospital for any of the above

• past or current prescriptions for psychotropic medication.

Records should indicate whether the person’s psychological and

emotional state has recently changed or that this is a long-term

condition. This needs to be balanced with not labelling people just

because they have had a psychiatric diagnosis in the past.

Medication records

Is the person currently being prescribed medication for depression or

anxiety? Have they been prescribed these in the past and they have

been discontinued?

Has the person been prescribed any medication that may be causing

them to appear apathetic, drowsy or with a reduced appetite? If this

is the case then signs of depression that you have observed may be

due to medication. Likewise, some medication can increase arousal

and agitation.

Also, be aware that people with dementia who have experienced

BPSD in the past may have been prescribed antipsychotic medication

that may have caused over-sedation. Again, this may make the

person appear particularly withdrawn and unresponsive. No one

should be on antipsychotic medication for longer than 12 weeks

without a review. If in doubt, refer to a pharmacist or GP for advice.

Behavioural charts

Examining behavioural charts can be helpful in identifying patterns

of behaviour and may enable a better understanding of someone’s

current emotional state and any potential triggers for anxiety or distress.

Care plans

Is there any mention in the care plans of low mood, anxiety and

distress or hallucinations? Are there strategies in place to try to

manage these?

Risk assessments

Are there any risk assessments for suicide or self-harm within the notes?

Mental health assessments

Has the mental health liaison team or community psychiatric service

been involved in this person’s care and are there reports you can

draw on? Check whether specific assessment scales (eg to assess

depression or anxiety) have been completed, such as the Geriatric

depression scale or Cornell scale for depression in dementia. Some

additional tools are listed at the end of this guide.

Recording the

correct level

You need to show evidence of how you have

considered psychological needs and their impact

on the individual’s health and wellbeing. You should

detail how this contributes to the overall care

needs and include underlying causes of any distress

you note.

You have to describe the actual needs of the individual with particular

attention to the frequency and intensity of need, unpredictability,

deterioration and any instability. You then need to ascribe an overall

level of need as described in the table shown in Appendix 1.

When making complex decisions about an individual’s needs, it can

be beneficial to discuss cases with colleagues, particularly those with

a mental health background who have more expertise in assessing

psychological need. The National Framework states that if, after

considering all the appropriate evidence, it is difficult to decide on

the level of need to record, you should choose the higher of the levels

under consideration and record the evidence relating to the decision

alongside any significant differences of opinion.

References

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Appendix 1:

Summarising the evidence

Consider evidence from different sources to make your decision.

Think carefully about the reliability of each source of evidence.

Level of need Description Evidence

No need Psychological and emotional

needs are not having an impact

on their health and wellbeing

From observation/

interview

From family

From staff

From records

Low need Mood disturbance, hallucinations

or anxiety symptoms, or periods

of distress that are having an

impact on their health and/or

wellbeing but respond to prompts

and reassurance.

Requires prompts to motivate self

towards activity and to engage

them in care planning, support

and/or daily activities.

From observation/

interview

From family

From staff

From records

Level of need Description Evidence

Moderate need Mood disturbance, hallucinations

or anxiety symptoms, or periods of

distress that do not readily respond

to prompts and reassurance and

have an increasing impact on

the individual’s health and/or

wellbeing.

Due to their psychological or

emotional state the individual has

withdrawn from most attempts

to engage them in care planning,

support and/or daily activities.

High need Mood disturbance, hallucinations

or anxiety symptoms, or periods of

distress that has a severe impact

on the individual’s health and/or

wellbeing.

Due to their psychological or

emotional state the individual has

withdrawn from any attempts to

engage them in care planning,

support and/or daily activities.

Is emotional and psychological distress a complicating

factor in communication, mobility, nutrition,

continence, tissue viability?

From observation/

interview

From family

From staff

From records

From observation/

interview

From family

From staff

From records

From observation/

interview

From family

From staff

From records

Appendix 2: Tools/scales

The following tools are validated measures that can be used

to help inform a decision around emotional and psychological

needs for a person with dementia.

Tool name and Description Link/

abbreviation reference

Behavioral

pathology in

Alzheimer’s

disease rating

scale

(BEHAVE-AD)

25-item scale to measure behavioural

and psychological symptoms,

rated on a 4-point scale of severity.

Also includes a global rating and

free response section at the end.

Designed for completion by a rater

following an interview with the

caregiver.

Reisberg, B, Auer, SR

and Monteiro, IM

(1996). Behavioral

pathology in

Alzheimer’s disease

(BEHAVE-AD) rating

scale. International

Psychogeriatrics, 8,

Suppl. 3.

http://supp.apa.

org/books/Making-

Evidence-Based-

Psychological-

Treatments-Work-

With-Older-Adults/

appendix6.4.pdf

Tool name and Description Link/

abbreviation reference

The Bradford

wellbeing profile

An observational tool that can be

used to aid assessments of social

and emotional needs of people with

dementia, through focusing on a

number of positive and negative

behavioural indicators defined in

the guidelines.

Bradford Dementia

Group (2008). The

Bradford wellbeing

profile. Bradford:

University of

Bradford.

www.bradford.

ac.uk/health/

media/

healthmedia/

Bradford-

Wellbeing-Profile-

with-cover-(3).pdf

Challenging

behaviour scale

(CBS)

25-item rating scale, designed for

completion by care home staff

following resident observations.

Focuses on incidence, frequency

and difficulty managing resident

behaviour.

Moniz-Cook, E,

Woods, R, Gardiner,

E, Silver, M and

Agar, S (2001).

The challenging

behaviour scale

(CBS): Development

of a scale for staff

caring for older

people in residential

and nursing homes.

British Journal of

Clinical Psychology,

40, 309–322.

Tool name and Description Link/

abbreviation reference

Cohen-Mansfield

agitation

inventory (CMAI)

29-item rating scale, designed for

completion by a trained researcher

interviewing nursing home staff/

caregivers. 29 agitated behaviours

are rated on a 7-point frequency

scale.

Cohen-Mansfield,

J, Marx, MS and

Rosenthal, AS (1989).

A description of

agitation in a nursing

home. Journal

of Gerontology:

Medical Sciences,

44(3), 77–84.

www.dementia-

assessment.com.

au/symptoms/

CMAI_Manual.pdf

Cornell scale for

depression in

dementia (CSDD)

19-item scale, designed for

completion by a rater following

observation and separate interviews

with the person with dementia and a

caregiver. Rates signs and symptoms

of depression of a 3-point scale

in terms of severity. Designed for

assessment of people with dementia

who are able as a minimum to

communicate their basic needs.

Alexopoulos, GS,

Abrams, RC, Young,

RC and Shamoian,

CA (1988). Cornell

scale for depression

in dementia.

Biological Psychiatry,

23(3), 271–284.

www.health.vic.gov.

au/older/toolkit/07C

ognition/03Depressi

on/docs/Cornell%20

Scale%20for%20

Depression%20

in%20Dementia-

Review-Depression.

pdf

Tool name and Description Link/

abbreviation reference

Cohen-Mansfield

agitation

inventory (CMAI)

29-item rating scale, designed for

completion by a trained researcher

interviewing nursing home staff/

caregivers. 29 agitated behaviours

are rated on a 7-point frequency

scale.

Cohen-Mansfield,

J, Marx, MS and

Rosenthal, AS (1989).

A description of

agitation in a nursing

home. Journal

of Gerontology:

Medical Sciences,

44(3), 77–84.

www.dementia-

assessment.com.

au/symptoms/

CMAI_Manual.pdf

Dysfunctional

behaviour rating

instrument

(DBRI)

22-item scale, designed for

completion by a caregiver. Rates

behaviours on two 6-point scales,

to measure frequency and how

problematic the behaviour is.

Molloy, DW, McIlroy,

WE, Guyatt, GH

and Lever, JA

(1991). Validity

and reliability of

the dysfunctional

behaviour rating

instrument.

Acta Psychiatrica

Scandinavica,

84, 103–106.

www.von.ca/

english/Caregiving/

CaregiverManual/

Guideline/Tools/

Tool%20J%20

-%20C ARES%20

Program%20Tools/

Tool%20J7.pdf

Tool name and Description Link/

abbreviation reference

Neuropsychiatric

inventory (NPI)

12-domain scale to assess

psychopathology and

neuropsychiatric symptoms.

Designed for completion by a rater

following a caregiver interview.

Rates behaviour on a 4-point scale

of frequency, a 3-point scale of

severity and a 5-point scale of

caregiver distress.

Cummings, JL,

Mega, M, Gray,

K, Rosenberg-

Thompson, S, Carusi,

DA and Gornbein,

J (1994). The

neuropsychiatric

inventory:

comprehensive

assessment of

psychopathology

in patients

with dementia.

Neurology, 44(12),

2308–2314.

www.dementia-

assessment.com.

au/behavioural/

NPI.pdf

Rating anxiety in

dementia scale

(RAID)

18-item scale, designed for

completion by a rater following

checks of clinical notes and interviews

with the patient and caregiver. Rates

signs and symptoms of anxiety on a

4-point scale in terms of severity.

Shankar, KK, Walker,

M, Frost, D and

Orrell, M (1999).

The development

of a valid and reliable

scale for rating

anxiety in dementia

(RAID). Aging and

Mental Health, 3,

29–49.

http://discovery.ucl.

ac.uk/136552/

Tool name and Description Link/

abbreviation reference

Revised memory

and behaviour

problems

checklist (RMBC)

24-item measure, designed for

completion by the caregiver.

Measures memory difficulties,

depression and disturbance.

Teri, L, Truaz, P,

Logsdon, R, Zarit,

S and Vitaliano, PP

(1992). Assessment

of behavioural

problems in

dementia; the

revised memory and

behavior problems

checklist. Psychology

and Aging, 7,

622–631.

www.apa.org/pi/

about/publications/

caregivers/

practice-settings/

assessment/tools/

memory-behavior.

aspx

Notes

Alzheimer’s Society is the UK’s leading support and research

charity for people with dementia, their families and carers.

We provide information and support to people with any form

of dementia and their carers through our publications,

National Dementia Helpline, website, and more than 2,000

local services. We campaign for better quality of life for people

with dementia and greater understanding of dementia.

We also fund an innovative programme of medical and social

research into the cause, cure and prevention of dementia and

the care people receive.

Alzheimer’s Society

Devon House

58 St Katharine’s Way

London E1W 1LB

020 7423 3500

inf[email protected]

alzheimers.org.uk

Code 935

Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499.

Alzheimer’s Society operates in England, Wales and Northern Ireland