PSICOLOGÍA DE LA GESTALT

The way that PwPs are able and willing to spend their time can change and this can result in feeling of dissatisfaction with activity patterns. The reason for this dissatisfaction can be:  that fewer activities can be performed due to fatigue and slowness or the risk/fear of

falling;

 that the performance capacity strongly fluctuates;

 that the motivation for performing activities has changed due to a reduced feeling of personal effectiveness (“I can’t do it”), depression, excessive demands from the social environment or apathy due to impaired executive functions;

 that the PwP can no longer perform certain activities, tasks and roles and is looking for alternatives.

Key question 15

What is the value of advising a PwP on the timing and choice of activities to increase satisfaction with daily activity patterns and participation?

Description of the intervention

The following interventions are described based on the experiences of the working group. Depending on the reason for dissatisfaction with how the patient occupies his time, the focus can be on:

A. Setting priorities in activities and rescheduling activities so that the pattern of activities is better suited to the patient’s abilities;

B. Structuring the day to provide external guidance; C. Choices with respect to possible activities.

Ad A. Setting priorities and rescheduling activities The following aspects are covered:

1. Giving information on the principles of balancing the demands of activities with the

abilities and energy levels of the person. It is also important to provide insight into the varying demands of activities and activity patterns and how one’s own abilities can fluctuate

depending on the situation, and how one can influence this. Not only physical aspects, but certainly psychosocial aspects play a role in this.

2. Analyzing the day/week (see assessment) with the PwP and adjusting the activity pattern in a way that it better suits the person’s abilities. In modifying the activity pattern, the PwP usually has to set priorities and reconsider previous standards and values with respect to activities. Considerations are:

 Is change possible and desirable with respect to the frequency, time and duration of activities?

 Is assistance (or partial assistance) necessary and desirable with respect to certain activities in an effort to make more energy and time available for other activities? In scheduling different activities and periods of rest, attention is paid to the times when the medicine takes effect (when the PwP feels best), which activities and contexts are energizing (provide satisfaction, are relaxing) and which activities and contexts require energy (require a lot of physical effort or are stressful). Situations in which time pressure is experienced often have a negative effect on the performance of PwPs. Advice is given on reducing time

pressure, for example, by carefully planning activities and allowing enough time for them (see also Section 5.4.8).

Experience shows that a scheduled afternoon nap works well for many PwPs.

When fatigue is strongly connected to poor quality of sleep, consultation with a neurologist or Parkinson’s disease nurse specialist is desirable in order to establish whether there are medical interventions or advice which can improve the quality of sleep.

Ad B. Structuring the day

If the lack of initiative in planning and performing activities is a problem, a structured day or week program can be drawn up together with the PwP and caregiver. This program provides external guidance and prompts. Encouragement and positive reinforcement from someone in the environment usually is and remains necessary as well. An important factor in promoting motivation for occupational performance is that the choice of activity matches the interests of

the person and that success can be experienced. Information can be provided on the importance of continuing to perform meaningful activities for the sake of both physical and psychosocial well-being.

If a lack of initiative is thought to be related to underlying depression, it is first necessary to refer the patient to a general practitioner, psychiatrist, or neurologist in order to determine suitable intervention options.

Ad C. Choosing activities

In this intervention, the occupational therapist advises and supervises the PwP in choosing and taking up (or resuming) activities. These activities should match the interests, motivations and capabilities of the person. At the same time, the therapist looks at how the environment can support engagement in activities.

Scientific basis

There are no studies on the effect of advising a PwP on prioritizing, and rescheduling activities.

Packard (1995) set up a structured occupational therapy group program for energy conservation for patients with chronic disease who suffer from fatigue. This program incorporates pacing occupations, balancing activity and rest and using a daily/weekly

schedule as a structure. The effectiveness of this energy conservation program is examined in a randomized controlled trial involving 169 patients with multiple sclerosis (183;184). Patients from the intervention group rated the impact of fatigue as less severe (p< 0.05) and felt more capable of using strategies to deal with the fatigue (p< 0.0001). However, it is not known which specific part of the program (the content, method of delivery or patients’ characteristics) made it effective.

There is also no evidence available regarding the effect of using structured daily or weekly activity schedules for PwPs with apathy and decreased motivation towards activities. In the literature on senile patients with apathy, motivating them by means of a planned daily structure is mentioned as an intervention, but its effect has not been studied (185;186).

Conclusion

Level n/a The effectiveness of interventions aimed at advising PwPs on daily activities and structure has not been studied.

Level 2 It is likely that a program for teaching the application of energy-saving principles – in which the consideration of priorities as part of one’s day and the allocating and scheduling of activities (daily structure) – is effective for people who suffer from fatigue due to multiple sclerosis.

Level 4 Experts believe that motivating patients by means of a planned daily structure can be suitable for senile patients with apathy. D Politis, 2004, Landes, 2001

Other considerations

While the study by Mathiowetz (2005) focuses on patients with multiple sclerosis, the expectation is that the conclusion can also apply to PwPs. From its own experience, the working group believes that principles of energy conservation in the timing and organization of daily activities are successfully applied as an occupational therapy intervention for many patients with chronic fatigue.

Furthermore, the working group has positive experiences with the use of a planned daily structure (see Intervention B) and consulting about possible activities (see Intervention C).

Recommendation 15

Advising a PwP on daily structure and activities is recommended to increase satisfaction with occupying time and to optimize opportunities for engagement in meaningful occupational performance.

This intervention is indicated if the particular PwP:

1. suffers greatly from slowness, fatigue or fluctuating performance; 2. takes little initiative in initiating activities;

3. can no longer carry out certain activities and has questions regarding suitable alternatives.