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Caring for People with Dementia guideline - Summary

Caring for People with Dementia: a clinical practice guideline for the radiography workforce (imaging and radiotherapy) January 2015

1. Introduction

1.1 This document summarises the outcomes of the clinical practice guideline for caring for people with dementia and their carers when attending for imaging or radiotherapy.  The full guideline has been approved by United Kingdom Council of the Society and College of Radiographers (SCoR) and is available within their policy and document library 1

1.2 The recommendations represent best practice for the whole radiographic workforce caring for people with dementia and their carers at the time of publication. They have been developed systematically using the best available evidence from research and expert opinion, including service users, and subjected to peer professional, lay and external review.  

 

1.3 This topic is important both because of the prevalence of dementia, and the role of imaging and radiotherapy in the diagnosis and treatment of illness in so many people. The incidence of dementia is increasing, particularly in the over 65s where the total population prevalence is 7.1%2, and it is this group that is most likely to attend imaging and radiotherapy services.  It is therefore vital that radiographers and other members of the radiographic workforce are able to understand and support the needs of people with dementia and their carers in order to deliver the best possible, personalised care and ensure the best outcomes from imaging and radiotherapy.

2. Guideline Purpose

2.1 The purpose of developing the guideline was to produce evidence-based recommendations for best practice in radiographic services (imaging and radiotherapy) when caring for people with dementia and their carers.  

2.2 The resulting document contains recommendations under 7 themes; some of which are simple to implement while others are more challenging. The themes are:

  1. The practice environment –acknowledging the need for special provision;
  2. Building relationships with patients and carers to optimise the patient experience; 
  3. Strategies for optimising communication with people with dementia and their carers;
  4. Understanding patients’ behaviour and adopting positive ways to reduce distressed reactions;
  5. Carer involvement;
  6. Staff skills and attitudes; 
  7. Training needs.

3. Specific Recommendations 

1. The practice environment –acknowledging the need for special provision 

1.1 The environment in the department should be adjusted by removing excess stimuli and ensuring that it is calm and well organized when patients with dementia arrive for imaging or treatment. 

1.2 The organisational culture of departments should be flexible and enabling, value good practice and support person-centred care. 

1.3 Departments should seek feedback from patients and carers about their experiences and act accordingly.

1.4 Departments should liaise with people with dementia and/or their carers about appointment times to mitigate factors that might increase stress and try to avoid compromising their normal routines. 

1.5 Departments should consider utilising forms of therapy that may provide reassurance such as music, which may be brought in by the patient, or reminiscence; inviting patients and carers to bring items such as photographs to be discussed prior to examination or treatment.  

1.6 Departments should investigate the use of identifiers such as forget me not, blue wrist bands or butterflies for in-patients (and outpatients where it allows).

1.7 More time should be allowed to perform procedures since this can reduce the need for restraint.

1.8 Departments should create the role of dementia champion supported by appropriate training. 

1.9 Departments should consider using appropriately trained volunteers as advocates for people with dementia.

1.10 Departments should offer support for staff (professional supervision) in recognition of the emotional burden associated with providing dementia-related care.

1.11 The organisation’s management information system (MIS) should support all staff to be fully informed of the patient’s diagnosis.

 

2. Building relationships with patients and carers to optimise the patient experience 

2.1 Acknowledge that people with dementia have both physical and psychological needs.

2.2 Provide a patient information pack that has been designed specifically for people with dementia and their carers in advance and involve lay people in writing it. 

2.3 Encourage patients to bring music, a ‘This is Me’3 document or other kind of reassuring material when attending the department.

2.4 Ensure that the patients are accompanied by a familiar person, such as a nurse or informal carer.

2.5 Work collaboratively with patients and their carers, maintaining the dignity and autonomy of the person at all times.

2.6 Work collaboratively with other professionals in the patient’s pathway, sharing experiences, encouraging dialogue and disseminating best practice; learning from each other to share knowledge of the patient.

 

3. Strategies for optimising communication with people with dementia and their carers

3.1 Liaise with caregivers and/or people with dementia about appointment times. 

3.2 Keep the number of professional practitioners in the room to a minimum with one person taking the lead.

3.3 Observe and value both verbal and non-verbal communication and always assume that some communication is possible.

3.4 Treat patients as equal partners in communication even when communication is limited.

3.5 Approach patients calmly, gently and in a relaxed manner.

3.6 Find out and use the patient’s preferred name.

3.7 Ensure you have the patient’s attention before giving important information.

3.8 Speak directly to the patient even if they are unable to respond, and keep eye contact.

3.9 Speak plainly and avoid complicated idioms of speech. 

3.10 Use short, simple sentences and a soft tone. 

3.11 Ask simple questions that require a short answer, e.g. yes/no.

3.12 Allow ample response time before repeating information.

3.13 Repeat sentences using the same words.

3.14 Ensure that interactions are not ended abruptly.

3.15 Remain calm if patient becomes agitated. 

3.16 Avoid moving or walking around during conversation.

3.17 Model the desired behaviour.

4. Understanding patients’ behaviour and adopting positive ways to reduce distressed reactions

4.1 Be aware that patients’ behaviour is a form of communication and recognise that withdrawal or passivity is a form of distressed reaction. 

4.2 Patients may exhibit distressed behaviours due to pain, fatigue, hunger or other discomfort; try to identify the cause of distressed reactions and avoid compromising normal routine activities.

4.3 Accept that people with dementia may have their own sense of reality and that challenging this may cause distress.  

4.4 Utilise forms of therapy that may provide reassurance such as music, which may be brought in by the patient, or reminiscence; inviting patients and carers to bring items such as photographs to be discussed prior to examination or treatment.  

4.5 The use of restraint should be the last resort; it can present risks to the patient (and others) and should not be used just because not enough staff are available. 

4.6 Identify safe ways to facilitate walking; this can reduce agitation and assist patient safety. Walking in a circular route can decrease agitation.

4.7 Use diversion or distraction techniques to create a suitably stimulating environment and gain cooperation. These could include; repetitive and familiar tasks e.g. sorting buttons, use of reminiscence, use of all senses: touch – sensory box, textures, tactile stimulation, hearing - personalised music, calming music, sight - visual way-finding cues and lighting and asking a family member to talk soothingly throughout the procedure (intercom). 

 

5. Carer involvement 

5.1 Family members and informal caregivers should be involved in care and considered assets.

5.2 Carers should be viewed as a source of expertise.

5.3 Staff should work collaboratively with patients and carers.

5.4 Staff should acknowledge that carers may also need information and reassurance and should avoid adopting a defensive or confrontational approach to them.

 

6. Staff skills and attitudes

People with dementia and their carers coming to the imaging or radiotherapy department may have additional needs that may challenge staff skills and attitudes.   

6.1 Consider that the lives of people with dementia are meaningful, do not assign blame to the patient. 

6.2 Challenge ‘us and them’ attitudes.

6.3 Be non-judgemental and show unconditional positive regard for patients and their carers. 

6.4 Do not lose sight of the person and avoid dehumanising behaviours. 

6.5 Appreciate that you can learn from people with dementia.

6.6 Recognise and act on patient cues regarding unmet needs and distressed reactions.

6.7 Use initial introduction and identity check to assess the patient’s level of understanding. 

6.8 Request consent and do not assume it in cases where express written consent is not required.

6.9 Modify information provided to the patient to include only that which is commensurate with informed consent and directly related to the activity and ensuring safety.

6.10 View family members and/or informal caregivers as assets and involve them in care.

6.11 Have an attitude of warmth and firmness.

6.12 Employ flexible approaches and be creative. 

6.13 Be a reflective practitioner, interrogating your own behaviours and attitudes towards people with dementia.

6.14 Engage in team-based reflection.

 

7. Training needs

7.1 All staff, clinical and non-clinical, should have additional training and development in dementia-related care. This should challenge dysfunctional cultural norms and include the emotional, social, intellectual and practical aspects of care.

7.2 Specialist training for the role of dementia champion should be sought.  

7.3 People with dementia and their carers should be involved in training and development opportunities for staff. 

7.4 Development opportunities should be as interactive as possible to encourage reflective practice and use a variety of learning and teaching strategies including observation, case studies and group discussions.

7.5 Dementia-related education should be available at pre-registration and post-registration (CPD) levels and continually revisited. 

7.6 The following list of topics is considered essential but is not exhaustive:

  • responding to behaviour that challenges
  • person-centred care
  • reminiscence and life stories
  • the legal framework of consent
  • capacity and consent – Mental Capacity Act 
  • deprivation of liberty (DoLS)
  • best interests
  • safeguarding vulnerable adults
  • human rights, dignity, autonomy, wellbeing
  • types of restraint; physical, chemical, mechanical, technological, psychological 
  • pain assessment and recognising pain 
  • theories and case studies of dementia care 
  • models of ethical decision making 
  • models of reflection and interrogating the self

4. Conclusion

4.1 The majority of the recommendations have no financial implications but they do require staff to be fully engaged with the needs of this particular group of patients and for the organisation to acknowledge that changes to systems and processes may be needed, both at department and organisation levels. 

4.2 There is a requirement for additional training and some additional resources, which will have to be budgeted for. It is recommended that departments identify a dementia champion to lead the implementation. All of these changes will take time and need auditing; an audit checklist has been included in the practice guideline to assist with this.

5. References

  1. Caring for People with Dementia: a clinical practice guideline for the radiography workforce (imaging and radiotherapy). The Society and College of Radiographers (SCoR), January 2015 http://www.sor.org/learning/document-library
  2. Dementia UK: second edition. The Alzheimer’s Society
  3. This is me document. RCN and The Alzheimer’s Society http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1604 [accessed 24.11.14]

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