A Group Intervention to Reduce A Group Intervention to Reduce Burden and Symptoms of Burden and Symptoms of

Depression in Informal Dementia Depression in Informal Dementia Caregivers.Caregivers.

Dr. Mark P. Tyrrell, Dr. Mark P. Tyrrell, School of Nursing & Midwifery, University College Cork.School of Nursing & Midwifery, University College Cork.

1313thth Annual Interdisciplinary Research Conference, Annual Interdisciplinary Research Conference, Trinity College DublinTrinity College Dublin88thth November, 2012 November, 2012

Background to the Study & Background to the Study & Literature ReviewLiterature Review

There are currently approximately 42,000 people There are currently approximately 42,000 people living with dementia in Ireland- this is set to living with dementia in Ireland- this is set to increase to 103,998 by 2036 increase to 103,998 by 2036 (O’Shea, 2007).(O’Shea, 2007).

The majority are living in their own homes being The majority are living in their own homes being cared for by family members who for the most cared for by family members who for the most part have had no preparation for the role part have had no preparation for the role (DoHC, 2004; Arskey et al., 2004).(DoHC, 2004; Arskey et al., 2004).

Informal caregivers can experience significant Informal caregivers can experience significant negative consequences of caregiving including negative consequences of caregiving including stress, burden, depression, anxiety, poor physical stress, burden, depression, anxiety, poor physical health and premature mortality health and premature mortality (O’Shea, 2003; Meshefedjian et al., 1998).(O’Shea, 2003; Meshefedjian et al., 1998).

Background to the Study & Background to the Study & Literature ReviewLiterature Review

Caregiver burden and caregiver symptoms of Caregiver burden and caregiver symptoms of depression are the most common negative depression are the most common negative consequences of informal dementia caregiving consequences of informal dementia caregiving (Andr(Andréén & Elmstn & Elmstååhl, 2008; Shl, 2008; Söörensen, Pinquart & Duberstein, 2006)rensen, Pinquart & Duberstein, 2006)

A number of non-pharmacological interventions A number of non-pharmacological interventions have emerged that have been used with varying have emerged that have been used with varying levels of success to offset these negative levels of success to offset these negative consequences of informal dementia caregiving consequences of informal dementia caregiving (Gallagher-Thompson & Coon, 2007).(Gallagher-Thompson & Coon, 2007).

Research on caregiver interventions to offset Research on caregiver interventions to offset burden and symptoms of depression has shown burden and symptoms of depression has shown mixed results mixed results (Gallagher-Thompson & Coon, 2007; Brodaty et al., 2003).(Gallagher-Thompson & Coon, 2007; Brodaty et al., 2003).

Background to the Study & Background to the Study & Literature ReviewLiterature Review

In general, psycho-educational and In general, psycho-educational and multi-component interventions have multi-component interventions have shown most promise demonstrating shown most promise demonstrating good effect sizesgood effect sizes

(Gallagher-Thompson & Coon; Livingstone et al., 2005; Pinquart & Sorenson, 2003).(Gallagher-Thompson & Coon; Livingstone et al., 2005; Pinquart & Sorenson, 2003).

Background to the Study & Background to the Study & Literature ReviewLiterature Review

One particular evidence-based psycho-One particular evidence-based psycho-educational caregiver intervention that has educational caregiver intervention that has shown considerable promise is that based on the shown considerable promise is that based on the Progressively Lowered Stress Threshold (PLST) Progressively Lowered Stress Threshold (PLST) Model Model (Hall & Buckwalter, 1987).(Hall & Buckwalter, 1987).

The PLST intervention is both psycho-educational The PLST intervention is both psycho-educational and multi-component and studies have shown it and multi-component and studies have shown it is effective for a variety of both caregiver and is effective for a variety of both caregiver and care recipient outcomes including caregiver care recipient outcomes including caregiver burden and caregiver symptoms of depression. burden and caregiver symptoms of depression. Accordingly, it has been given evidence based Accordingly, it has been given evidence based treatment status treatment status (Gallagher-Thompson & Coon, 2007).(Gallagher-Thompson & Coon, 2007).

Gaps in the Literature & Gaps in the Literature & Advancement of KnowledgeAdvancement of Knowledge

Thus far, the PLST intervention has only been delivered on Thus far, the PLST intervention has only been delivered on a one-to-one basis in the caregivers home.a one-to-one basis in the caregivers home.

Previous studies have relied on a dedicated home care Previous studies have relied on a dedicated home care gerontological specialist nursing service to deliver the gerontological specialist nursing service to deliver the intervention.intervention.

The PLST intervention is costly when delivered in the The PLST intervention is costly when delivered in the traditional one-to-one format and has not been delivered as traditional one-to-one format and has not been delivered as a group intervention before.a group intervention before.

A group delivered PLST intervention may be as effective A group delivered PLST intervention may be as effective and efficient as the traditional one-to-one intervention.and efficient as the traditional one-to-one intervention.

Study AimStudy 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.

MethodologyMethodology Research Design:Research Design: Quasi-experimentalQuasi-experimental

A Single group pretest-posttest designA Single group pretest-posttest design

Research Sample:Research Sample:Convenience sample (n=93) informal Convenience sample (n=93) informal

dementia caregivers.dementia caregivers.

Research Intervention:Research Intervention:PLST Intervention (adapted).PLST Intervention (adapted).

Data CollectionData Collectioni) Zarit Burden Interview (ZBI)i) Zarit Burden Interview (ZBI)ii) Centre for Epidemiological Studies ii) Centre for Epidemiological Studies

Depression Depression Scale (CES-D)Scale (CES-D)iii)Researcher developed Demographic iii)Researcher developed Demographic

QuestionnaireQuestionnaire

PLST InterventionPLST InterventionThe primary purpose of the PLST group intervention is to The primary purpose of the PLST group intervention is to provide caregiver education and support based on the provide caregiver education and support based on the following essential elements of the PLST Model:following essential elements of the PLST Model:

Providing ongoing education for families and patients about the disease Providing ongoing education for families and patients about the disease process.process.

Assisting patients and caregivers with development of routines and Assisting patients and caregivers with development of routines and strategies that enhance appropriate behaviour patterns.strategies that enhance appropriate behaviour patterns.

Helping caregivers and patients to simplify day to day tasks such as Helping caregivers and patients to simplify day to day tasks such as cooking, bathing, selecting clothing, and dressing.cooking, bathing, selecting clothing, and dressing.

Assisting with problem-solving strategies over the course of the illness as Assisting with problem-solving strategies over the course of the illness as behaviour and functional abilities change. behaviour and functional abilities change.

Locating resources and developing support networks.Locating resources and developing support networks.

Providing ongoing emotional support and counsellingProviding ongoing emotional support and counselling for patients, caregivers, for patients, caregivers, and other network members.and other network members.

(Adapted from Hall, 1998).(Adapted from Hall, 1998).

The Progressively Lowered Stress The Progressively Lowered Stress Threshold Model (PLST)Threshold Model (PLST)

Basic Principles:Basic Principles:

-Some behaviours result from losses associated -Some behaviours result from losses associated with dementia.with dementia.

-Other behaviours result from environmental -Other behaviours result from environmental stress.stress.

-Stress takes many forms in dementia.-Stress takes many forms in dementia.

-Stress threshold is lower in dementia.-Stress threshold is lower in dementia.

The Progressively Lowered Stress The Progressively Lowered Stress Threshold Model (PLST)Threshold Model (PLST)

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

Effects of stress during a 24-hour day in Effects of stress during a 24-hour day in the person with Dementiathe person with Dementia

AM Noon PM Night

Stress threshold

Anxious behavior

Normative behavior

Dysfunctional behavior

PLSTPLST

Heightenedperceived stressors Normative behavior

Stress thresholdAnxious behavior

Dysfunctional behavior

Planned activity levels for the person with Planned activity levels for the person with Dementia to Minimize the Effects of Stress.Dementia to Minimize the Effects of Stress.

AM Noon PM Night

Dysfunctional behavior

Stress threshold

Anxious behavior

Normative behavior

ParticipationParticipation

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 AnalysisData Analysis

Changes in burden and in symptoms of Changes in burden and in symptoms of depression over time, and the effects of depression over time, and the effects of participant characteristics on the change participant characteristics on the change in burden and symptoms of depression in burden and symptoms of depression over time were investigated using over time were investigated using covariance pattern modelling.covariance pattern modelling.

The relationship between burden and The relationship between burden and symptoms of depression was measured symptoms of depression was measured using Pearson’s correlation coefficient.using Pearson’s correlation coefficient.

ResultsResults The mean burden score at baseline was 41.60 The mean burden score at baseline was 41.60

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

ResultsResults

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

ResultsResults The mean depression score at baseline The mean depression score at baseline

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

ResultsResults

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

ResultsResults

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

ConclusionConclusion

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

Thank You!Thank You!