Theme 1

Communication that is person-centred and dignified

1.1 Communicating in a dignified way

The importance of protecting personal and social dignity during continence care is significant and many HCPs reported a belief that PLWD and their caregivers prefer not to talk about incontinence because it is a highly embarrassing and distressing issue [63-65, 87].

HCPs believed that the provision of quality continence care for PLWD includes measures and approaches that conceal incontinence by creating situations that allowed PLWD to go to the toilet in private and avoiding communication, which revealed their issues around incontinence or care dependence that could cause them to feel embarrassed, ashamed, or humiliated [65].

The importance of respecting PLWDs right to privacy was also considered important. In order to relieve PLWD perceived embarrassment of accepting assistance [63, 65], HCPs stressed the importance of building rapport and trust, using humour [87], and “acting natural” when supporting continence needs.

Health care professionals report that in order to communicate with PLWD in ways that would minimise any emotional impact that HCPs should have the appropriate knowledge and skills. Other strategies to enhance privacy included whispering to the client about toileting issues and keeping these issues secret [63]. However, HCPs acknowledged that PLWD may have difficulties in recognising and communicating their continence needs and that not being able to request toileting assistance was viewed as a barrier to protecting dignity [65].

1.2 Attitudes of HCPs towards continence and continence care

The language used within a care environment is important regarding continence care and was identified as not always respectful but where staff had good knowledge of the people they cared for, then these approaches were respectful and built good relationships with PLWD [83]. Also identified were coercive continence care practices, including the use of verbal or physical force to accept wearing continence pads or other forms of incontinence containment and to accept continence checks [86].

The research also suggested that chastising a person for being incontinent could be said to be a form of verbal abuse. Although some ward staff promote continence, this does not appear to happen consistently within acute settings. Relatives expressed concern that PLWD would be happy to go to the toilet if assistance was provided, but that staff encouraged them to “do it in the nappy” [66]. Other times, it was found that in some cases, routine toileting was avoided, and cues ignored when staff members were busy, or appeared uncomfortable with or disinterested in providing support [63, 66].

1.3 The importance of non-verbal cues

People living with dementia are not always able to recognise and communicate that they need to go to the toilet or indicate that they need assistance.

It is therefore important to recognise the non-verbal signals, body language, facial expressions, behaviours, and any signs that the PLWD uses to communicate in such instances so that their wishes can be acknowledged.

Listening carefully to the words or phrases that PLWD use for describing the toilet [67, 79, 81–83] as well as being able to recognise familiar gestures [67, 82, 83] is seen as important.

New staff should be trained to recognise the importance of toileting and to how to understand individual behaviours and non-verbal cues in relation to toileting [63].

A range of different non-verbal cues had been observed or reported in the literature and included the following:

  • someone pulling/ taking off their clothing when they need to go to the toilet [10, 68, 80]
  • making particular sounds such as moaning or grunting [63, 68, 80]
  • assuming a different posture [10]
  • someone looking around [63]
  • fidgeting [10, 63, 79, 88]
  • getting up and walking around or pacing [63, 78, 79, 88]
  • restlessness [10, 68]
  • holding their crotch or their stomach [10, 63, 79]
  • different facial expressions such as worry [10] or sorrow [68]
  • going to the corner of the room [79]
  • and pulling at their clothes [10, 88]

Also reported were a number of affective cues which included anger, profanity, and “appearing frustrated and irritable” [63]. Another study investigated common behaviours when PLWD experience either bowel movement or urination needs and found that anxiety, restlessness, and taking off/putting on clothes “inappropriately” occurred in more than 30% of patients [68].

1.4 Finding appropriate words and symbols to describe the toilet

Wilkinson et al. sought to evaluate the comparative suitability of a range of words or symbols to label a toilet for PLWD. As part of an institutional survey (n = 24), the words that were used to label the toilet were and in some institutions, there was no labelling (22%).

There are a range of words and symbols to label a toilet. One survey reported that words were most commonly used “toilet” (67%), “male/female” (11%) and in some institutions, no labelling at all (22%). Only four institutions used symbols.

“Ladies” and “gents” was preferred by those assessed with no cognitive impairment and “toilet” by those assessed with moderate dementia ([67] p. 164). The international symbol (male and female symbols) was preferred by people assessed with no cognitive impairment or mild dementia whilst the toilet symbol was preferred by those identified with more advanced dementia [67].

1.5 Strategies for improving communication

In order to reduce anxiety/fear/ embarrassment, it is identified as being important to check HCPs awareness of good communication techniques when working with PLWD [69] and that HCPs introduce themselves and seek the PLWD’s approval before performing tasks [65].

Other suggestions include:

  • prompting [10, 80, 82, 83]
  • getting to know the PLWD [80] and how they communicate [81]
  • determining their routines, habits, and lifestyle [79, 81]
  • getting HCPs to ask the PLWD how they can be help them manage their continence [79] and communicating with the family to determine usual behaviour patterns [63]
  • not making assumptions and see the person as an individual [81].

One study described how relatives wanted support and reassurance from HCPs that they were providing the care that was required and they wanted information before any problems such as incontinence occurred so that they could feel prepared [61].

1.6 Using technology to present instructions

Two pilot studies conducted by the same team explored the effectiveness of verbal instructions, presented automatically through simple technology. The technology consisted of a modified Walkman with recordings of verbal instructions that directed the PLWD to undertake bathroom-related activities in a certain order. Sensors detected when a PLWD entered the bathroom prompting the first instruction telling them to sit on the toilet. After a long predetermined interval, this instruction was then followed by another instruction for them to wash their hands with the soap.

Data from both studies showed that the use of verbal instructions and basic technology to control their presentation has the potential to be effective in helping people with mild or moderate Alzheimer’s Disease recapture relevant daily activities, including toileting [70, 71].