- Email: [email protected]
VOICES OF SPOUSES LIVING WITH PARTNERS WITH NEUROPSYCHIATRIC SYMPTOMS RELATED TO DEMENTIA
Poster Presentations: Tuesday, July 26, 2016 Table 2 Number of Driving Recommendations for Dementia from InternationalNational Guidelines Country
Guideline Title
Canada
CMA: Canadian Medical Association (8th ed.) CCMTA: Canadian Council of Motor Transport Administrators NIBW: Not If But When (NS)* The Champlain Dementia Network (ON/QB)* AAMVA: American Association of Motor Vehicle Administrators NHTSA AMA: U.S. National Highway Traffic Safety Administration and American Medical Association AAN-IVERSON: American Academy of Neurology, Iverson (2010) DVLA SWANSEA: Drivers Medical Group, Driver and Vehicle Licensing Agency, Swansea SMA: Singapore Medical Association AUSTROADS: Austroads and National Transport Commission of Australia NZ: New Zealand Transport Agency RCPI/RSA: Royal College of Physicians of Ireland and Road Safety Authority
USA
UK
Singapore Australia
New Zealand Ireland
P979
Table 3 Results of Comprehensive Literature Database Searches and Systematic Screening
# Recommendations for Dementia
Number of Total Studies Total Studies Search Results for Title for Abstract from Database Screening* Screening**
Literature Database
11
CINAHL Cochrane Library Embase Medline Psychlnfo SCOPUS Transportation Research Information Database
10
8 13 10
4434 1346 1817 3887 1731 2907 2279
12860
3206
*After duplicate removal **After title screening by two independent reviewers
8
and full-text screening and assessments of quality and risk of bias will be completed before April 2016. Conclusions: A well-executed knowledge synthesis incorporating knowledge-user input will increase confidence of clinicians using the guidelines, inform transportation policy, and improve driving safety. This process will be used as a model to inform future guideline updates on driving with dementia and with other health conditions.
8
9
P3-344 9
VOICES OF SPOUSES LIVING WITH PARTNERS WITH NEUROPSYCHIATRIC SYMPTOMS RELATED TO DEMENTIA
as2, Kirsti Skovdahl3, Bj€oo€rn Fossum2, Marie Tyrrell1, Pernilla Hiller Dorota Religa4, 1Karolinska Institute, Stockholm, Sweden; 2Sophiahemmet University, Stockholm, Sweden; 3South East Norway University College, Drammen, Norway; 4Karolinska Institutet, Stockholm, Sweden. Contact e-mail: [email protected]
6
6 6
Background: Persons with dementia, who reside in their own homes,
*indicates guidelines included in this exercise which are provincial, not national
are often cared for by family members or friends. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. The quality of life for both the person with behavioural and psychological symptoms and their careers are affected, increasing both suffering and risk for hospitalisation. Family careers to persons with dementia have identified behavioural changes as more
Table: 1 Respondents and persons with dementia demographics Respondent Age/Gender
PWD Age/Gender
Dementia diagnosis
Civil status/Years together
Home care assistance
PWD previous Occupation
75yrs/Female 80yrs/Female 74yrs/Female 66yrs/Female 72yrs/Female 68yrs/Male 82yrs/Male 79yrs/Male 73yrs/Female 64yrs/Female 79yrs/Female 85yrs/Female 78yrs/Female 77yrs/Female
75yrs/Male 85yrs/Male 74yrs/Male 71yrs/Male 72yrs/Male 68yrs/Female 82yrs/Female 80yrs/Female 80yrs/Male 71yrs/Male 85yrs/Male 86yrs/Male 79yrs/Male 83yrs/Male
A.D. A.D+V.D. A.D. A.D. A.D. A.D. A.D. A.D. A.D. V.D. V.D. A.D. A.D. A.D.+ V.D.
Married/50yrs Married/50yrs Partners/27yrs Married/40yrs Married/50yrs Married/40yrs Married/65yrs Married/55yrs Married/52yrs Married/30yrs Married/45yrs Married/61yrs Married/55yrs Partners/33yrs
No No No No No Yes No No Yes Yes No No No No
Businessman Businessman Engineer Businessman Butcher Bank official Housewife Physician Engineer Director Sales/Farmer Businessman Engineer Businessman
P980
Poster Presentations: Tuesday, July 26, 2016
distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience behavioural and psychological symptoms in a community setting. Aim: To describe spouses’ experiences of living with partners who have neuropsychiatric symptoms related to dementia. Method: Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included the completion of the NPI (Neuropsychiatric Inventory, Cummings, 1994). Interview data was analysed using content analysis. Results: The neuropsychiatric symptoms identified were within three of four possible symptom categories; Behaviour, Psychosis and Mood.
From the narrative data three main themes emerged; Coping, Domestic violence and vulnerability and Social isolation. Conclusions: A large proportion of persons with dementia reside in the community, a greater awareness, within the emergency response services about the welfare and safety of these persons and their families is required. Support offered to persons with dementia and their families should be more person-centered meeting their individual needs. P3-345
WHAT IS THE POINT OF A RESEARCH READY CARE HOME NETWORK?
Adam Michael Smith, UCL Institute of Neurology, London, United Kingdom. Contact e-mail: [email protected] Table: 2 Neuropsychiatric Inventory symptoms identified by partners to 14 persons with dementia NPI Symptom
Prevelence
Frequency
Severity
Distress for family
Delusions Hallucinations Agitation/Aggression Depression/Dysphoria Anxiety Elation/Euphoria Apathy/Indifference Disinhibition Irritability/Lability Aberrant motor behaviour Sleep & Nighttime behaviour Appetite & Eating disorders
8/14 9/14 9/14 9/14 9/14 0/14 11/14 7/14 12/14 6/14
3-4 3-4 3-4 1-3 1-3 1-4 1-3 1-4 2-4
1-2 1-3 1-3 1-3 1-2 1-3 1-3 1-3 2-3
2-5 3-5 2-5 2-5 2-5 0-5 1-5 1-5 0-4
6/14
3-3
1-3
0-5
8/14
2-4
1-3
1-5
Table: 3 Qualitative data analysis CATEGORIES
SUBTHEMES
THEME
Standard support offered not relevant to needs Support suggestions for unmet needs Being prepared for sudden unpredictable events
Support
Coping
Being positive Distracting from situation Changed person
It’s the disease that dominates Immediate assistance Threatening self and others Unpredictable behaviour Anti-social symptoms Time for self Feeling trapped
Background: The Enabling Research in Care Homes Programme
(ENRICH) has successfully gathered and published guidance and information from the research and nursing home communities www.enrich.nihr.ac.uk. The process and value of doing this, is something we are keen to share with our countries. The overall aim of this programme has been to address the issues of nursing / care home residents being under represented in research, and researchers overlooking this difficult and challenged area of care. We have published information on how to navigate the governance systems, which differ from healthcare, and practical advice and case studies on how to set-up and deliver a study in a nursing / care home. The programme has supported almost all care home studies funded and being delivered across the UK, and the site has over 1,400 unique visitors within the past 3 months. In doing this, we identified further difficulties in engaging with the care home communities, where staff turn over is high, English is not the first language, and trust of researchers and the time involved has made them reluctant to engage. With this challenge we have established a ’research ready care home network’, this has over 1,000 care homes, and is has been a proactive way of approaching care homes to get input to studies, and to support delivery of studies when ready to recruit. This has reduced recruitment time, and reduced the risk of studies failing to deliver due to underestimating the time taken to identify and engage with nursing / care homes and residents with dementia.
P3-346 Constructive coping strategies
ASSESSMENT OF THE NEEDS OF ALZHEIMER’S DISEASE CAREGIVERS IN THE AFRICAN AMERICAN COMMUNITY
Rosalyn Lang, Corey Young, Dora Som-Pimpong, Takiyah Starks, George Crawford, Sharon Cook, Goldie S. Byrd, North Carolina A&T State University, Greensboro, NC, USA. Contact e-mail: [email protected] Background: African Americans are twice more likely to be diag-
Changes in persona related to dementia Hostile behaviour
Domestic violence & vulnerability
Challenging symptoms
Social isolation
nosed with Alzheimer’s than other ethnic groups; therefore, African American, family caregivers will face a greater burden in Alzheimer’s care management, health access and health outcomes. Research has also shown that African American spouses (as caregivers) and female caregivers are at higher risk of experiencing task difficulty, depressive symptoms and negative life changes as a result of providing care. This data emphasizes the need to understand the experiences, needs and perceptions of African American informal caregivers of people with Alzheimer’s. The goal of this descriptive study was to assess the needs of caregivers, their perceived burdens and the role that gender may play in caregiving
Guideline Title
Canada
CMA: Canadian Medical Association (8th ed.) CCMTA: Canadian Council of Motor Transport Administrators NIBW: Not If But When (NS)* The Champlain Dementia Network (ON/QB)* AAMVA: American Association of Motor Vehicle Administrators NHTSA AMA: U.S. National Highway Traffic Safety Administration and American Medical Association AAN-IVERSON: American Academy of Neurology, Iverson (2010) DVLA SWANSEA: Drivers Medical Group, Driver and Vehicle Licensing Agency, Swansea SMA: Singapore Medical Association AUSTROADS: Austroads and National Transport Commission of Australia NZ: New Zealand Transport Agency RCPI/RSA: Royal College of Physicians of Ireland and Road Safety Authority
USA
UK
Singapore Australia
New Zealand Ireland
P979
Table 3 Results of Comprehensive Literature Database Searches and Systematic Screening
# Recommendations for Dementia
Number of Total Studies Total Studies Search Results for Title for Abstract from Database Screening* Screening**
Literature Database
11
CINAHL Cochrane Library Embase Medline Psychlnfo SCOPUS Transportation Research Information Database
10
8 13 10
4434 1346 1817 3887 1731 2907 2279
12860
3206
*After duplicate removal **After title screening by two independent reviewers
8
and full-text screening and assessments of quality and risk of bias will be completed before April 2016. Conclusions: A well-executed knowledge synthesis incorporating knowledge-user input will increase confidence of clinicians using the guidelines, inform transportation policy, and improve driving safety. This process will be used as a model to inform future guideline updates on driving with dementia and with other health conditions.
8
9
P3-344 9
VOICES OF SPOUSES LIVING WITH PARTNERS WITH NEUROPSYCHIATRIC SYMPTOMS RELATED TO DEMENTIA
as2, Kirsti Skovdahl3, Bj€oo€rn Fossum2, Marie Tyrrell1, Pernilla Hiller Dorota Religa4, 1Karolinska Institute, Stockholm, Sweden; 2Sophiahemmet University, Stockholm, Sweden; 3South East Norway University College, Drammen, Norway; 4Karolinska Institutet, Stockholm, Sweden. Contact e-mail: [email protected]
6
6 6
Background: Persons with dementia, who reside in their own homes,
*indicates guidelines included in this exercise which are provincial, not national
are often cared for by family members or friends. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. The quality of life for both the person with behavioural and psychological symptoms and their careers are affected, increasing both suffering and risk for hospitalisation. Family careers to persons with dementia have identified behavioural changes as more
Table: 1 Respondents and persons with dementia demographics Respondent Age/Gender
PWD Age/Gender
Dementia diagnosis
Civil status/Years together
Home care assistance
PWD previous Occupation
75yrs/Female 80yrs/Female 74yrs/Female 66yrs/Female 72yrs/Female 68yrs/Male 82yrs/Male 79yrs/Male 73yrs/Female 64yrs/Female 79yrs/Female 85yrs/Female 78yrs/Female 77yrs/Female
75yrs/Male 85yrs/Male 74yrs/Male 71yrs/Male 72yrs/Male 68yrs/Female 82yrs/Female 80yrs/Female 80yrs/Male 71yrs/Male 85yrs/Male 86yrs/Male 79yrs/Male 83yrs/Male
A.D. A.D+V.D. A.D. A.D. A.D. A.D. A.D. A.D. A.D. V.D. V.D. A.D. A.D. A.D.+ V.D.
Married/50yrs Married/50yrs Partners/27yrs Married/40yrs Married/50yrs Married/40yrs Married/65yrs Married/55yrs Married/52yrs Married/30yrs Married/45yrs Married/61yrs Married/55yrs Partners/33yrs
No No No No No Yes No No Yes Yes No No No No
Businessman Businessman Engineer Businessman Butcher Bank official Housewife Physician Engineer Director Sales/Farmer Businessman Engineer Businessman
P980
Poster Presentations: Tuesday, July 26, 2016
distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience behavioural and psychological symptoms in a community setting. Aim: To describe spouses’ experiences of living with partners who have neuropsychiatric symptoms related to dementia. Method: Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included the completion of the NPI (Neuropsychiatric Inventory, Cummings, 1994). Interview data was analysed using content analysis. Results: The neuropsychiatric symptoms identified were within three of four possible symptom categories; Behaviour, Psychosis and Mood.
From the narrative data three main themes emerged; Coping, Domestic violence and vulnerability and Social isolation. Conclusions: A large proportion of persons with dementia reside in the community, a greater awareness, within the emergency response services about the welfare and safety of these persons and their families is required. Support offered to persons with dementia and their families should be more person-centered meeting their individual needs. P3-345
WHAT IS THE POINT OF A RESEARCH READY CARE HOME NETWORK?
Adam Michael Smith, UCL Institute of Neurology, London, United Kingdom. Contact e-mail: [email protected] Table: 2 Neuropsychiatric Inventory symptoms identified by partners to 14 persons with dementia NPI Symptom
Prevelence
Frequency
Severity
Distress for family
Delusions Hallucinations Agitation/Aggression Depression/Dysphoria Anxiety Elation/Euphoria Apathy/Indifference Disinhibition Irritability/Lability Aberrant motor behaviour Sleep & Nighttime behaviour Appetite & Eating disorders
8/14 9/14 9/14 9/14 9/14 0/14 11/14 7/14 12/14 6/14
3-4 3-4 3-4 1-3 1-3 1-4 1-3 1-4 2-4
1-2 1-3 1-3 1-3 1-2 1-3 1-3 1-3 2-3
2-5 3-5 2-5 2-5 2-5 0-5 1-5 1-5 0-4
6/14
3-3
1-3
0-5
8/14
2-4
1-3
1-5
Table: 3 Qualitative data analysis CATEGORIES
SUBTHEMES
THEME
Standard support offered not relevant to needs Support suggestions for unmet needs Being prepared for sudden unpredictable events
Support
Coping
Being positive Distracting from situation Changed person
It’s the disease that dominates Immediate assistance Threatening self and others Unpredictable behaviour Anti-social symptoms Time for self Feeling trapped
Background: The Enabling Research in Care Homes Programme
(ENRICH) has successfully gathered and published guidance and information from the research and nursing home communities www.enrich.nihr.ac.uk. The process and value of doing this, is something we are keen to share with our countries. The overall aim of this programme has been to address the issues of nursing / care home residents being under represented in research, and researchers overlooking this difficult and challenged area of care. We have published information on how to navigate the governance systems, which differ from healthcare, and practical advice and case studies on how to set-up and deliver a study in a nursing / care home. The programme has supported almost all care home studies funded and being delivered across the UK, and the site has over 1,400 unique visitors within the past 3 months. In doing this, we identified further difficulties in engaging with the care home communities, where staff turn over is high, English is not the first language, and trust of researchers and the time involved has made them reluctant to engage. With this challenge we have established a ’research ready care home network’, this has over 1,000 care homes, and is has been a proactive way of approaching care homes to get input to studies, and to support delivery of studies when ready to recruit. This has reduced recruitment time, and reduced the risk of studies failing to deliver due to underestimating the time taken to identify and engage with nursing / care homes and residents with dementia.
P3-346 Constructive coping strategies
ASSESSMENT OF THE NEEDS OF ALZHEIMER’S DISEASE CAREGIVERS IN THE AFRICAN AMERICAN COMMUNITY
Rosalyn Lang, Corey Young, Dora Som-Pimpong, Takiyah Starks, George Crawford, Sharon Cook, Goldie S. Byrd, North Carolina A&T State University, Greensboro, NC, USA. Contact e-mail: [email protected] Background: African Americans are twice more likely to be diag-
Changes in persona related to dementia Hostile behaviour
Domestic violence & vulnerability
Challenging symptoms
Social isolation
nosed with Alzheimer’s than other ethnic groups; therefore, African American, family caregivers will face a greater burden in Alzheimer’s care management, health access and health outcomes. Research has also shown that African American spouses (as caregivers) and female caregivers are at higher risk of experiencing task difficulty, depressive symptoms and negative life changes as a result of providing care. This data emphasizes the need to understand the experiences, needs and perceptions of African American informal caregivers of people with Alzheimer’s. The goal of this descriptive study was to assess the needs of caregivers, their perceived burdens and the role that gender may play in caregiving