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7. Guideline Recommendations

The recommendations are divided into specific sections related to the guideline objective and related questions in 3 above.

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 (Heath et al 2010, McGilton et al 2007, Moyle et al 2008).  

1.2 The organisational culture of departments should be flexible and enabling, value good practice and support person-centred care (Baillee 2012b, Cunningham & Archibald 2006, Webster 2011). 

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 (Andrews 2012, McCloskey 2004, McGilton et al 2007, Moyle et al 2008, Mowbray 2010). 

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 (Clisset 2013, McCloskey 2004).  

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) (Andrews 2012, Duffin 2013).

1.7 More time should be allowed to perform procedures since this can reduce the need for restraint (Borbasi et al 2006, Mowbray 2010).

1.8 Departments should create the role of dementia champion supported by appropriate training (Borbasi et al 2006, Chater 2013, Crabtree 2010). 

1.9 Departments should consider using appropriately trained volunteers as advocates for people with dementia (Borbasi et al 2006, Galvin 2010).

1.10 Departments should offer support for staff (professional supervision) in recognition of the emotional burden associated with providing dementia-related care (Andrews 2012, Baillee 2012b, Bridges 2011).

1.11 The organisation’s management information system (MIS) should support all staff to be fully informed of the patient’s diagnosis (Armstrong 2011).

 

2. Building relationships with patients and carers to optimise the patient experience (Baillee2012, McGilton et al 2007, Nolan 2006) 

2.1 Acknowledge that people with dementia have both physical and psychological needs (Clissett 2013).

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 (Chater 2013, Mowbray 2010). 

2.3 Encourage patients to bring music, a ‘This is Me’ document or other kind of reassuring material when attending the department (Baillee 2012, Heath et al 2010).

2.4 Ensure that the patients are accompanied by a familiar person, such as a nurse or informal carer (Chater 2013). 

2.5 Work collaboratively with patients and their carers, maintaining the dignity and autonomy of the person at all times (Bridges 2011, Nolan 2006, Webster 2011).

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 (Bridges 2011, Chater 2013).

 

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 (Andrews 2012, McCloskey 2004, McGilton et al 2007, Moyle et al 2008, Mowbray 2010.). 

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 (Cowdell 2010, Nolan 2006).

3.4 Treat patients as equal partners in communication even when communication is limited (Nolan 2006).

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

3.6 Find out and use the patient’s preferred name (Bridges 2011).

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 (Heath et al 2010). 

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 (Clissett 2013).

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 (Norman 2006). 

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 (Clissett 2013, Galvin 2010, McGilton et al 2007).

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 (Clissett 2013, McCloskey 2004).  

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 (Chater 2013, Gallagher 2011, Galvin 2010). 

4.6 Identify safe ways to facilitate walking; this can reduce agitation and assist patient safety. Walking in a circular route can decrease agitation (Andrews 2012, Galvin 2010).

4.7 Use diversion or distraction techniques to create a suitably stimulating environment and gain cooperation (Clissett 2013, King 2012). These could include;

Repetitive and familiar tasks e.g. sorting buttons (King 2012),

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 (Clissett 2013, King 2012),

Ask 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 (Andrews 2012, Baillie 2012, Borbasi et al 2006, Clissett 2013b, Heath et al 2010, Jurgens 2012), McGilton et al 2007, Moyle et al 2008, Nolan 2006, Webster 2011) .

5.2 Carers should be viewed as a source of expertise (Clissett 2013b).

5.3 Staff should work collaboratively with patients and carers (Bridges 2011, Webster 2011).

5.4 Staff should acknowledge that carers may also need information and reassurance and should avoid adopting a defensive or confrontational approach to them (Nolan 2006, Jurgens 2012).

 

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 (Nolan 2006). 

6.2 Challenge ‘us and them’ attitudes (Cowdell 2010).

6.3 Be non-judgemental and show unconditional positive regard for patients and their carers (McCloskey 2004). 

6.4 Do not lose sight of the person and avoid dehumanising behaviours (Cunningham & Archibald 2006, McCloskey 2004). 

6.5 Appreciate that you can learn from people with dementia (Cowdell 2010)

6.6 Recognise and act on patient cues regarding unmet needs and distressed reactions (Dewing 2010, Heath et al 2010, McCloskey 2004)).

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 (Bridges 2011).

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 (McCloskey 2004).

6.10 View family members and/or informal caregivers as assets and involve them in care (Andrews 2012, Baillie 2012, Borbasi et al 2006, Clissett 2013b, Heath et al 2010, Jurgens 2012), McGilton et al 2007, Moyle et al 2008, Nolan 2006, Webster 2011).

6.11 Have an attitude of warmth and firmness (Heath et al 2010).

6.12 Employ flexible approaches and be creative (Baillie 2012). 

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

6.14 Engage in team-based reflection (Chater 2013).

 

7. Training needs

7.1 All staff, clinical and non-clinical, should have additional training and development in dementia-related care (Baillie 2012b, Dewing 2010). 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 (Cowdell 2010, Norman 2006).

7.5 Dementia-related education should be available at pre-registration and post-registration (CPD) levels and continually revisited (Baillie 2012b, Dewing 2010). 

7.6 The following list of topics is considered essential but is not exhaustive (Gandesha 2012, Leung 2010)

  • responding to behaviour that challenges
  • person-centred care (Crabtree 2010)
  • reminiscence and life stories
  • the legal framework of consent
  • capacity and consent – Mental Capacity Act (Mowbray 2010)
  • deprivation of liberty (DoLS)
  • best interests
  • safeguarding vulnerable adults
  • human rights, dignity, autonomy, wellbeing
  • types of restraint; physical, chemical, mechanical, technological, psychological (Gallagher 2011)
  • pain assessment and recognising pain (Galvin 2010, Gandesha 2012)
  • theories and case studies of dementia care 
  • models of ethical decision making (Gallagher 2011)
  • models of reflection and interrogating the self (Heath et al 2010, Moyle et al 2008)

The following theoretical frameworks and models were identified in the literature reviews as useful ways for practitioners and others to understand and interpret the evidence. 

  • Kitwood‘s (1997) enhancers and detractors.
  • PLST Conceptual Model for people with Alzheimer’s disease. 
  • Hall and Buckwater’s (1987) Model for understanding stress thresholds and their reduction.
  • Antecedents, Behaviour, Consequences (ABC) Tool for understanding behaviour - a reflective tool for practitioners to understand the effect of the environment on behaviour.
  • Nolan, M. et al’s (2006) The Senses Framework: Improving Care for  Older People through a Relationship-Centred Approach. GRIP: University of Sheffield.
  • Li et al’s (2003) CARE - Creating Avenues for Relative Empowerment.  A programme for improving self- efficacy for care givers.

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