Dementia Gateway: Difficult situations

Case study: Reality check? When a person with dementia talks about something that doesn't exist.

Susan becomes agitated when she tries to pick her kids up from school every day…

Background

Afternoons and evenings had become a very stressful time for Susan and the staff who cared for her in the residential home. From about 3pm, Susan would stand at the front door of the care home and bang on it, becoming increasingly agitated. Often, this continued for hours. This was the time when Susan's children would have returned from school.

Initially, staff tried to reason with Susan, explaining that her children were grown up and had children of their own, but she couldn't accept this, usually became very angry and insisted that she needed to pick them up from school.

Then staff tried lying to Susan, saying someone else was picking the children up. Sometimes this helped a little – she'd calm down for a while, but then gradually become distressed again. At other times, Susan challenged the staff member with questions about who was picking up her children, and why, and where they were being taken, eventually accusing the staff member of lying.

The staff had discussed Susan's situation and decided that it would be best if they could distract her earlier in the afternoon to try to avoid her heading to the front door or thinking about her children. This approach had varying success.

If they tried to involve Susan in a group activity in the afternoon, she usually left it and headed to the front door. Spending one-to-one time with her was more effective, but too time-consuming to be carried out every day. Visits from her husband were sometimes, but not always helpful, and he was in poor health and only able to visit twice a week. Three of her children visited regularly at weekends, and Susan was always happy and relaxed at these times; however, they were unable to visit on weekdays.

What's important is not to give up, but to maintain the conviction that the person is expressing important messages about their needs, and that it is possible for the person's well-being to be improved when their needs are addressed.

Read the full case study:

Understanding the situation – 1. The story so far… Open
In order to develop some new strategies, the team leader asked Susan's key worker to find out more about Susan's past, particularly focusing on her lifestyle when her children were young. The key worker met with Susan's husband and asked questions such as:
- What did Susan do while her children were at school?
- What were Susan's interests?
- What was important to Susan at home?
The key worker found out that Susan had been a proud housewife. She kept herself busy all day and the home was always spotless. She cooked a meal for the family every evening. She was very focused on her children's lives, helping them with schoolwork and encouraging them to take part in activities such as sport and music. The house was often very busy after school – the children's friends were often invited over. Susan never really had time for any hobbies, but did a lot of baking as well as cooking meals.
Understanding the situation – 2. Research and development findings Open

The care team didn't refer to research – in reality most care homes are not well-linked with research or academic institutions. However, a growing evidence base does exist to support and inform the efforts of staff in care homes. Take, for example, the growing number of randomised controlled trials on person-centred care, including a recent one from Australia which confirmed the value of person-centred care in residential settings for people with dementia (Chenoweth et al 2009). Keeping in touch with key organisations (such as the Alzheimer's Society), subscribing to professional publications (such as the Journal of Dementia Care) and attending professional learning events such as conferences are some ways that care homes can find out about this type of research.

A wide range of practice guidance on dementia care is also available for care homes to use as resources for team and individual learning – often available for free. SCIE's web-based resources are a good example here: its Open Dementia Programme (see in particular Module 2, 'Living with dementia' and Module 7, 'Positive communication') and 'Managing risk, minimising restraint' are two online learning packages aimed at care staff that are directly relevant to the material in this case study.
Understanding the situation – 3. Views collected from key people Open

The main priority was to improve Susan's well-being. Other residents were involved also – Susan's behaviour was unsettling for them. Sometimes other residents followed Susan's lead and became concerned about their own children. The staff team were finding Susan's behaviour increasingly stressful. Her family were very concerned. The GP had suggested that he could prescribe antipsychotic medication, but the care home were keen to see if they could find a more constructive solution.

Although Susan frequently expressed her strong need to collect her children from school, over time staff began to realise that the underlying message Susan was expressing was: 'I need to have a role, as I did when I was a housewife and mother. I need to look after people and have them look up to me. I need to be needed.'

Susan's children were concerned when told how unsettled Susan often was, but since she was happy when they visited, they were not unduly worried. Susan's husband often said how guilty he felt that he was no longer able to look after her at home.
Actions Open
The care team wanted Susan to:
- be happy and relaxed in the afternoons: this was to be measured through staff observations
- feel she had a role in the care home and could 'look after people': this was to be measured by observing Susan's non-verbal and verbal reactions to different activities that would be offered
- feel that the care home was her home, and to feel a sense of responsibility for keeping it looking nice: this was to be measured again through staff observations of Susan's behaviour and her willingness to become involved in housework.
Having established so much more about Susan's past and interests, the care team were then able to develop a care plan much more tailored to Susan's specific needs.

The team came up with six new strategies to try:
1. Care staff and domestic staff invited Susan to become involved in doing simple housework tasks, including dusting, laying tables, folding laundry, making her bed and tidying her room. The invitation to help was always phrased as 'Would you mind helping me to…' or 'I really need your help with…' rather than 'Would you like to…', so that the emphasis was on Susan feeling needed.
2. Susan was asked to help when residents were being offered drinks and snacks. This included accompanying the staff member who was pushing the tea trolley, asking residents if they wanted milk and sugar, pouring milk from a jug into the cups, handing the cup to the resident and offering round a plate of biscuits.
3. Susan was also asked to 'keep an eye on' any other residents who tended to need a lot of help.
4. At least once a week, Susan's keyworker worked one-to-one with her to make biscuits or cakes. With a few prompts, Susan was able to do this almost independently. These were offered to other residents at tea-time, and staff always highlighted that Susan had made them. All staff, and many residents, thanked Susan.
5. A weekly small group cookery activity was set up and Susan was involved in a leadership role, helping the staff member to select a recipe and giving some help to other group members who were less able than her.
6. When Susan had nothing else to do, the home manager or deputy manager would invite Susan into the office to 'help them out'. Most often, this consisted of asking Susan to read something they had written and check it for mistakes.
Staff were pleased that they had some practical strategies to try out, though were concerned that it would be hard to find the time. Some were worried that these ideas were not directly addressing the problem of Susan wanting to leave the home in the afternoons, but generally staff were prepared to give it a go. Susan's children were supportive and thought that the suggested approaches were a good idea. Susan's husband didn't feel that the new strategies would help and felt that the only thing that would help Susan would be to come back home, but this was not possible due to his ill-health.
Results Open
Susan willingly responded to each invitation to help with housework tasks. She was able to undertake many of these independently once the staff member had started it off – for example, if she was given a duster and asked to dust the lounge, this often kept her occupied for at least half an hour. One day she took hold of the vacuum cleaner that had been momentarily left unattended and began vacuuming the corridor. She seemed so purposeful when she was doing this that it was agreed to include vacuuming as one of her regular activities. It was important that a staff member was close by to keep an eye on trailing leads, though if no-one was free to accompany Susan, she was equally happy to use the vacuum cleaner without it being plugged in!

Susan was also very enthusiastic about helping with the tea trolley. A minor problem arose when Susan started selecting a biscuit for each resident and handing it to them (which people weren't happy about) but if the staff member kept reminding her to offer the plate and let the resident choose, she did this.

Susan really enjoyed baking and visibly showed her pride each time she was thanked for the cakes or biscuits she had made. The cookery group went very well and Susan showed a lot of patience helping other residents.

The management team found that Susan was quiet and absorbed when checking their paperwork in the office.

Only rarely did Susan still talk about picking her children up from school, and this tended to happen only on days when she had not been doing much. When this issue did arise, the most helpful responses were:
- to say something that validated Susan's role as a mother, for example, 'You've always been such a good mother; however big they get, they still need you.')
- to mention any expected upcoming visits from one of her children
- to ask for her help with something, for example, 'Diana is very quiet today – could you have a chat with her to see if she's alright?')
The staff were surprised and very pleased that Susan's desperate need to leave the care home to collect her children from school almost completely disappeared.

Prior to the start of this new way of working with Susan, she had come to be seen as a 'problem to be managed' rather than as a person with very strong needs. They had not understood how Susan's unmet needs had led directly to the behaviour that had been so challenging for everyone concerned.

Staff were also surprised at the level of Susan's abilities that emerged. Because of her disorientation in time, her short-term memory problems and her sometimes jumbled communication, the team had assumed that she was less able than she actually was, and had been unaware that she was still so capable of doing housework, helping at tea-time, being so caring towards other residents and generally so willing to lend a hand.

Through treating Susan as 'one of the team', the attitudes of staff towards Susan really changed: they actually began to enjoy her company, sense of humour and the warmth of her personality. Before, this had been hard to see because of her distress.

The team also discovered that the extra time they had expected this new approach to take was more than balanced out by the time they saved not having to deal with Susan's distress every afternoon. In fact, it was extra thought, rather than extra time, that staff needed to give to Susan, since handing her a duster or asking for her help with the laundry didn't take any longer at all. The one-to-one baking was an extra time commitment on the part of Susan's key worker, but it was agreed that this was time well spent.
Advice for others Open

The care home's approach to supporting Susan is sustainable. There needs to be recognition that, due to Susan's Alzheimer's disease, her abilities are likely to deteriorate over time, so the staff need to maintain their commitment to monitoring Susan's responses and thinking of new ways of meeting her needs. For example, if – in the future – Susan loses most of her abilities necessary for baking, this may no longer be a suitable activity, but an alternative will need to be found, since Susan's need to feel needed is likely to be retained.

With their newfound understanding of Susan as a person, and their knowledge about her life history, the team now have a commitment to meeting her holistic needs. Having been so impressed by the change in Susan brought about through their efforts; the team are highly motivated to continue with this approach and to work to understand the needs of any resident who talks about things that don't seem to be real.

Gathering information about people's life histories is highly useful in developing an understanding of individuals' needs and recognising what they are expressing through their apparently confused actions or words.

With training and leadership that helps staff understand person-centred approaches to dementia care, and with good information about the person's background, staff can be encouraged to recognise possible messages that might underlie someone's 'different reality'. Staff will need support and encouragement to try out their ideas for meeting the needs they think that a person is expressing, and to learn from the person's responses and adapt their approach if necessary. Even when there is no way of finding out anything about the person's life history, through a process of guesswork, trial, error and reflection, a committed staff team can often find effective ways of addressing apparent needs.

What's important is not to give up, but to maintain the conviction that the person is expressing important messages about their needs, and that it is possible for the person's well-being to be improved when their needs are addressed.

Once the person's needs have been recognised, and suitable ways of addressing these needs have been developed, it is very important for this information to be recorded in the person's plan of care to ensure that the whole team is aware of how to work with the individual.

This approach takes time and enthusiasm rather than money. It doesn't necessarily require extra care hours to be funded (although this would always be useful!), but instead care staff need to be able to reprioritise how they spend their time. Supporting a person with dementia to improve their well-being will often save time in the long run, since the difficult situation that would have required a lot of staff attention is no longer happening. Staff are more able to manage their time effectively when they are able to be proactive rather than reactive.
Financial implications Open

Chenoweth, L., King M.T., Jeon Y-H., Brodaty, H., Stein-Parbury, J., Norman, R., Haas, M. and Luscombe, G. (2009) 'Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial', The Lancet Neurology, vol 8, issue 4, pp 317–25.

SCIE (2009) Open Dementia Programme e-learning resource: Module 2, 'Living with dementia' and Module 7, 'Positive communication'.

SCIE (2009) 'Managing risk, minimising restraint: challenges, dilemmas and positive approaches for working with older people in care homes' e-learning resource.