A Group Intervention to Reduce Burden and Symptoms of Depression in Informal Dementia Caregivers. Dr. Mark P. Tyrrell, School of Nursing & Midwifery, University College Cork. 13th Annual Interdisciplinary Research Conference, Trinity College Dublin 8th November, 2012

Background to the Study & Literature Review There are currently approximately 42,000 people living with dementia in Ireland- this is set to increase to 103,998 by 2036 (O’Shea, 2007). The majority are living in their own homes being cared for by family members who for the most part have had no preparation for the role (DoHC, 2004; Arskey et al., 2004). Informal caregivers can experience significant negative consequences of caregiving including stress, burden, depression, anxiety, poor physical health and premature mortality (O’Shea, 2003; Meshefedjian et al., 1998).

Background to the Study & Literature Review Caregiver burden and caregiver symptoms of depression are the most common negative consequences of informal dementia caregiving (Andrén & Elmståhl, 2008; Sörensen, Pinquart & Duberstein, 2006) A number of non-pharmacological interventions have emerged that have been used with varying levels of success to offset these negative consequences of informal dementia caregiving (Gallagher-Thompson & Coon, 2007). Research on caregiver interventions to offset burden and symptoms of depression has shown mixed results (Gallagher-Thompson & Coon, 2007; Brodaty et al., 2003).

Background to the Study & Literature Review In general, psycho-educational and multi-component interventions have shown most promise demonstrating good effect sizes (Gallagher-Thompson & Coon; Livingstone et al., 2005; Pinquart & Sorenson, 2003).

Background to the Study & Literature Review One particular evidence-based psycho-educational caregiver intervention that has shown considerable promise is that based on the Progressively Lowered Stress Threshold (PLST) Model (Hall & Buckwalter, 1987). The PLST intervention is both psycho-educational and multi-component and studies have shown it is effective for a variety of both caregiver and care recipient outcomes including caregiver burden and caregiver symptoms of depression. Accordingly, it has been given evidence based treatment status (Gallagher-Thompson & Coon, 2007).

Gaps in the Literature & Advancement of Knowledge Thus far, the PLST intervention has only been delivered on a one-to-one basis in the caregivers home. Previous studies have relied on a dedicated home care gerontological specialist nursing service to deliver the intervention. The PLST intervention is costly when delivered in the traditional one-to-one format and has not been delivered as a group intervention before. A group delivered PLST intervention may be as effective and efficient as the traditional one-to-one intervention.

Study Aim The aim of the study was to establish if a group intervention based on the Progressively Lowered Stress Threshold Model (PLST) had a beneficial effect on informal dementia caregivers’ burden and their symptoms of depression, and to investigate whether caregiver characteristics or characteristics of the caregiving situation had an effect on caregivers’ burden or their symptoms of depression.

Methodology Research Design: Quasi-experimental A Single group pretest-posttest design Research Sample: Convenience sample (n=93) informal dementia caregivers. Research Intervention: PLST Intervention (adapted). Data Collection i) Zarit Burden Interview (ZBI) ii) Centre for Epidemiological Studies Depression Scale (CES-D) iii)Researcher developed Demographic Questionnaire

PLST Intervention The primary purpose of the PLST group intervention is to provide caregiver education and support based on the following essential elements of the PLST Model: Providing ongoing education for families and patients about the disease process. Assisting patients and caregivers with development of routines and strategies that enhance appropriate behaviour patterns. Helping caregivers and patients to simplify day to day tasks such as cooking, bathing, selecting clothing, and dressing. Assisting with problem-solving strategies over the course of the illness as behaviour and functional abilities change. Locating resources and developing support networks. Providing ongoing emotional support and counselling for patients, caregivers, and other network members. (Adapted from Hall, 1998).

The Progressively Lowered Stress Threshold Model (PLST) Basic Principles: -Some behaviours result from losses associated with dementia. -Other behaviours result from environmental stress. -Stress takes many forms in dementia. -Stress threshold is lower in dementia.

The Progressively Lowered Stress Threshold Model (PLST) Normally, adults have a relatively high threshold to stress. People with dementia however, have a diminished ability to interact with their environment- they find things in their environment confusing because their brain is no longer able to process information accurately. Consequently, they have a heightened potential for anxiety and dysfunctional behaviour- their stress threshold is lower.

Effects of stress during a 24-hour day in the person with Dementia AM Noon PM Night Stress threshold Anxious behavior Normative behavior Dysfunctional behavior

PLST Dysfunctional behavior Stress threshold Anxious behavior Heightened perceived stressors Normative behavior Stress threshold Anxious behavior Dysfunctional behavior

Planned activity levels for the person with Dementia to Minimize the Effects of Stress. AM Noon PM Night Dysfunctional behavior Stress threshold Anxious behavior Normative behavior

Participation One hundred and twenty eight informal dementia caregivers were recruited and consented to participate in the study. Ninety three (73%) completed baseline measures pre-intervention; 90 of the 93 (97%) completed questionnaires at 7 weeks, and 85 (91%) completed questionnaires at 13 weeks.

Data Analysis Changes in burden and in symptoms of depression over time, and the effects of participant characteristics on the change in burden and symptoms of depression over time were investigated using covariance pattern modelling. The relationship between burden and symptoms of depression was measured using Pearson’s correlation coefficient.

Results The mean burden score at baseline was 41.60 (SD 14.70) indicating that the average caregiver in this study was experiencing moderate to severe burden before they commenced the intervention. This score decreased to 38.04 (SD 15.11) two weeks after the intervention (Week 7) but increased again to 39.12 (SD 15.98) eight weeks after the intervention (Week 13). The change in score between baseline and Week 7 was statistically significant (p=0.009) but the change between baseline and Week 13 was non-significant (p=0.095).

Results The change in burden over time depended on the age group of the participant and was greatest for those aged <55 years (p=0.020). The mean burden scores increased over time for those aged 55-64 and 65-74 years.

Results The mean depression score at baseline was 18.82 (SD 9.93) suggesting that on average, caregivers in this study attained scores commensurate with a diagnosis of clinical depression (CES-D 16+). At two weeks post intervention (Week 7), this mean score decreased to 14.02 (SD 9.21) with a slight rise at eight weeks post intervention (Week 13) (mean 15.92; SD 10.36). The decrease in mean depression scores between baseline and Week 7 and between baseline and Week 13 both reached statistical significance (p<0.001).

Results The change in depression scores over time depended on the age group of the caregiver and the severity of memory loss of the care recipient. Changes in depression scores were different for middle aged caregivers. Those who were caring for someone with mild/moderate memory loss experienced a significantly greater decrease in symptoms between baseline and Week 7 than those caring for someone with severe memory loss.

Results A large positive correlation between caregiver burden and their symptoms of depression was found at all three time points.

Conclusion Results show that adapting the original PLST intervention for group delivery can reduce informal dementia caregivers’ levels of burden and their symptoms of depression.

Thank You!