Dementia and Human Rights Martina Schmidhuber

Transcription

1 Dementia and Human Rights Martina Schmidhuber Visiting time in Norway, August/September 2018

2 Outline Vulnerability of people with dementia inherent situational pathogenic Strategies in Austria and Germany Austria Germany Bavaria Advance Directives in Germany A Pilot Study in Bavaria Questions to Norway

3 Outline Vulnerability of people with dementia inherent situational pathogenic Strategies in Austria and Germany Austria Germany Bavaria Advance Directives in Germany A Pilot Study in Bavaria Questions to Norway

4 Vulnerability of People with Dementia See Catriona Mackenzie/Wendy Rogers/Susan Dodds (2014):

5 Vulnerability of People with Dementia See Catriona Mackenzie/Wendy Rogers/Susan Dodds (2014): Inherent: intrinsic to the human condition

6 Vulnerability of People with Dementia See Catriona Mackenzie/Wendy Rogers/Susan Dodds (2014): Inherent: intrinsic to the human condition All people are inherently vulnerable to hunger, thirst, sleep deprivation, physical harm, emotional hostility, social isolation

7 Vulnerability of People with Dementia Situational:

8 Vulnerability of People with Dementia Situational: Caused by the personal, social, political, economic, or environmental situation

9 Vulnerability of People with Dementia Situational: Caused by the personal, social, political, economic, or environmental situation Floods or hurricans

10 Vulnerability of People with Dementia Situational: Caused by the personal, social, political, economic, or environmental situation Floods or hurricans Illness

11 Vulnerability of People with Dementia Pathogenic:

12 Vulnerability of People with Dementia Pathogenic: Caused by social relationships, abusive interperonal, sociopolitical oppression

13 Vulnerability of People with Dementia Pathogenic: Caused by social relationships, abusive interperonal, sociopolitical oppression People with cognitive disorders: sexual abuse by their carers

14 Vulnerability of People with Dementia Pathogenic: Caused by social relationships, abusive interperonal, sociopolitical oppression People with cognitive disorders: sexual abuse by their carers Undermines autonomy, exacerbates the sense of powerless

15 Vulnerability of People with Dementia People with dementia are vulnerable in all three forms: inherent, situational, pathogenic

16 Vulnerability of People with Dementia People with dementia are vulnerable in all three forms: inherent, situational, pathogenic What should be done?

17 Vulnerability of People with Dementia People with dementia are vulnerable in all three forms: inherent, situational, pathogenic What should be done? Human Rights for People with Dementia

18 Vulnerability of People with Dementia People with dementia are vulnerable in all three forms: inherent, situational, pathogenic What should be done? Human Rights for People with Dementia Support relational autonomy

19 Vulnerability of People with Dementia People with dementia are vulnerable in all three forms: inherent, situational, pathogenic What should be done? Human Rights for People with Dementia Support relational autonomy Advance Directives as support of autonomy at the end of life

20 Vulnerability of People with Dementia Autonomy as an Human Rights Issue

21 Vulnerability of People with Dementia Autonomy as an Human Rights Issue Autonomy as one of the Prinicples of Medical Ethics : - Autonomy - Beneficence - Non-maleficence - Justice

22 Vulnerability of People with Dementia Convention on the Rights of Persons with Disablities (CRPD)

23 Vulnerability of People with Dementia Convention on the Rights of Persons with Disablities (CRPD) Dementia Alliance International (DAI): Although 163 Member States and the European Union have ratified the Convention, there is no evidence that persons with dementia are being included in its implementation at national level.

24 Outline Vulnerability of people with dementia inherent situational pathogenic Strategies in Austria and Germany Austria Germany Bavaria Advance Directives in Germany A Pilot Study in Bavaria Questions to Norway

25 Dementia Strategy in Austria The Austrian Dementia Strategy Living well with dementia The Austrian Dementia Report 2014

26 Dementia Strategy in Austria concerns: people with dementia

27 Dementia Strategy in Austria concerns: people with dementia informal and formal carers

28 Dementia Strategy in Austria concerns: people with dementia informal and formal carers health care and social care professionals and service providers

29 Dementia Strategy in Austria concerns: people with dementia informal and formal carers health care and social care professionals and service providers the public

30 Dementia Strategy in Austria concerns: people with dementia informal and formal carers health care and social care professionals and service providers the public (political) decision makers on national and regional level

31 Dementia Strategy in Austria: Objectives

32 Dementia Strategy in Austria: Objectives 1. Promote participation and selfdetermination/autonomy for people with dementia and their caregivers:

33 Dementia Strategy in Austria: Objectives 1. Promote participation and selfdetermination/autonomy for people with dementia and their caregivers: - removing the stigma

34 Dementia Strategy in Austria: Objectives 1. Promote participation and selfdetermination/autonomy for people with dementia and their caregivers: - removing the stigma - dementia-sensitive living environment

35 Dementia Strategy in Austria: Objectives 1. Promote participation and selfdetermination/autonomy for people with dementia and their caregivers: - removing the stigma - dementia-sensitive living environment - support self-help groups

36 Dementia Strategy in Austria: Objectives 1. Promote participation and selfdetermination/autonomy for people with dementia and their caregivers: - removing the stigma - dementia-sensitive living environment - support self-help groups - advance care planning

37 Dementia Strategy in Austria: Objectives 1. Promote participation and selfdetermination/autonomy for people with dementia and their caregivers: - removing the stigma - dementia-sensitive living environment - support self-help groups - advance care planning 2. Ensure high-quality knowledge on and raise awareness of dementia in the public but also in special target groups

38 Dementia Strategy in Austria: Objectives 3. Improve knowledge, skills, and expertise of formal and informal caregivers

39 Dementia Strategy in Austria: Objectives 3. Improve knowledge, skills, and expertise of formal and informal caregivers 4. Create consistent framework conditions for coordinated care

40 Dementia Strategy in Austria: Objectives 3. Improve knowledge, skills, and expertise of formal and informal caregivers 4. Create consistent framework conditions for coordinated care 5. Ensure and improve health care and social care services

41 Dementia Strategy in Austria: Objectives 6. Improve cooperation and coordination between different care services

42 Dementia Strategy in Austria: Objectives 6. Improve cooperation and coordination between different care services 7. Improve and ensure quality of care by research on dementia

43 Dementia Strategy in Germany The alliance for people with dementia Fields of action:

44 Dementia Strategy in Germany The alliance for people with dementia Fields of action: Science and research

45 Dementia Strategy in Germany The alliance for people with dementia Fields of action: Science and research Social responsibility

46 Dementia Strategy in Germany The alliance for people with dementia Fields of action: Science and research Social responsibility Support for people with dementia and their families

47 Dementia Strategy in Germany The alliance for people with dementia Fields of action: Science and research Social responsibility Support for people with dementia and their families Structuring the support and health care system

48 Dementia Strategy in Bavaria (Germany) The five key objectives of the Dementia Strategy of Bavaria:

49 Dementia Strategy in Bavaria (Germany) The five key objectives of the Dementia Strategy of Bavaria: Change the society s awareness of dementia

50 Dementia Strategy in Bavaria (Germany) The five key objectives of the Dementia Strategy of Bavaria: Change the society s awareness of dementia Ensure the self determination and the dignity of people with dementia throughout all stages of the disease

51 Dementia Strategy in Bavaria (Germany) The five key objectives of the Dementia Strategy of Bavaria: Change the society s awareness of dementia Ensure the self determination and the dignity of people with dementia throughout all stages of the disease Improve the living conditions for people with dementia and their families

52 Dementia Strategy in Bavaria (Germany) The five key objectives of the Dementia Strategy of Bavaria: Change the society s awareness of dementia Ensure the self determination and the dignity of people with dementia throughout all stages of the disease Improve the living conditions for people with dementia and their families Improve the opportunity to participate in social life for people with dementia and their families

53 Dementia Strategy in Bavaria (Germany) The five key objectives of the Dementia Strategy of Bavaria: Change the society s awareness of dementia Ensure the self determination and the dignity of people with dementia throughout all stages of the disease Improve the living conditions for people with dementia and their families Improve the opportunity to participate in social life for people with dementia and their families Ensure an appropiate, need-tailored support and care

54 Dementia Strategy in Bavaria (Germany) Fields of action:

55 Dementia Strategy in Bavaria (Germany) Fields of action: Public education and public relations (buddies for ADL)

56 Dementia Strategy in Bavaria (Germany) Fields of action: Public education and public relations (buddies for ADL) Prevention and early diagnosis (non-drug therapies)

57 Dementia Strategy in Bavaria (Germany) Fields of action: Public education and public relations (buddies for ADL) Prevention and early diagnosis (non-drug therapies) Basic and advanced training (physicians)

58 Dementia Strategy in Bavaria (Germany) Fields of action: Public education and public relations (buddies for ADL) Prevention and early diagnosis (non-drug therapies) Basic and advanced training (physicians) Home care and easing the burden for informal caregivers (counselling services)

59 Dementia Strategy in Bavaria (Germany) Fields of action: Public education and public relations (buddies for ADL) Prevention and early diagnosis (non-drug therapies) Basic and advanced training (physicians) Home care and easing the burden for informal caregivers (counselling services) Inpatient care in hospitals and geriatric rehabilitation facilities

60 Dementia Strategy in Bavaria (Germany) Fields of action: Inpatient care in nursing homes ( oasis of care )

61 Dementia Strategy in Bavaria (Germany) Fields of action: Inpatient care in nursing homes ( oasis of care ) End-of-life care

62 Dementia Strategy in Bavaria (Germany) Fields of action: Inpatient care in nursing homes ( oasis of care ) End-of-life care Networks and municipal structures (senior citizen strategies)

63 Dementia Strategy in Bavaria (Germany) Fields of action: Inpatient care in nursing homes ( oasis of care ) End-of-life care Networks and municipal structures (senior citizen strategies) Basic and health services research (BayDem: Pwd and their caregivers in focus of research)

64 Dementia Strategy in Bavaria (Germany) Fields of action: Inpatient care in nursing homes ( oasis of care ) End-of-life care Networks and municipal structures (senior citizen strategies) Basic and health services research (BayDem: Pwd and their caregivers in focus of research) Legal support

65 MAKS Motoric Alltagspraktisch (everyday life) Kognitiv (cognitive) Spiritual 2 times a week slows down the progress for 12 months

66 Villages for people with dementia First: in Hogewey (NL) 2009

67 Villages for people with dementia First: in Hogewey (NL) 2009 In Germany: Tönebön am See

68 Villages for people with dementia First: in Hogewey (NL) 2009 In Germany: Tönebön am See Dementia friendly architecture

69 Villages for people with dementia First: in Hogewey (NL) 2009 In Germany: Tönebön am See Dementia friendly architecture Less aggressive

70 Villages for people with dementia First: in Hogewey (NL) 2009 In Germany: Tönebön am See Dementia friendly architecture Less aggressive Feel more independent

71 Villages for people with dementia First: in Hogewey (NL) 2009 In Germany: Tönebön am See Dementia friendly architecture Less aggressive Feel more independent Discussion: Fake? Ghetto?

72 Outline Vulnerability of people with dementia inherent situational pathogenic Strategies in Austria and Germany Austria Germany Bavaria Advance Directives in Germany A Pilot Study in Bavaria Questions to Norway

73 Advance Directives in Germany

74 Advance Directives in Germany The Study (Outline): Advance directives and dementia

75 Advance Directives in Germany The Study (Outline): Advance directives and dementia Results of the interviews with

76 Advance Directives in Germany The Study (Outline): Advance directives and dementia Results of the interviews with People with dementia in early stage

77 Advance Directives in Germany The Study (Outline): Advance directives and dementia Results of the interviews with People with dementia in early stage Informal caregivers

78 Advance Directives in Germany The Study (Outline): Advance directives and dementia Results of the interviews with People with dementia in early stage Informal caregivers Conclusion

79 Advance Directives in Germany since 2009 in Germany

80 Advance Directives in Germany since 2009 in Germany Goal: to support Autonomy

81 Advance Directives in Germany since 2009 in Germany Goal: to support Autonomy Possibility to define how you would be treated in the case of dementia

82 Advance Directives in Germany since 2009 in Germany Goal: to support Autonomy Possibility to define how you would be treated in the case of dementia Question: What do people know about advance directives?

83 Advance Directives in Germany Survey in the European Metropol Region Nürnberg (Germany)

84 Advance Directives in Germany Survey in the European Metropol Region Nürnberg (Germany) Face-to-face-interviews with open and structured questions

85 Advance Directives in Germany Survey in the European Metropol Region Nürnberg (Germany) Face-to-face-interviews with open and structured questions 52 persons with dementia in early stage (aged 53 to 92 years)

86 Advance Directives in Germany Survey in the European Metropol Region Nürnberg (Germany) Face-to-face-interviews with open and structured questions 52 persons with dementia in early stage (aged 53 to 92 years) 51 informal caregivers (aged 31 to 81 years)

87 Advance Directives in Germany How did you get the information about advance directives?

88 Advance Directives in Germany Why did you write or would you write an advance directive?

89 Advance Directives in Germany Doctor is obligated to fulfill my advance directive People with dementia Informal caregivers

90 Advance Directives in Germany Advance directives cannot be revoked People with dementia Informal caregivers

91 Advance Directives in Germany Dementia specific terms are possible People with dementia Informal caregivers

92 Advance Directives in Germany Conclusions: People are not always sure about the possibilities and limitations of advance directives

93 Advance Directives in Germany Conclusions: People are not always sure about the possibilities and limitations of advance directives More information and enlightment is necessary to support the idea of advance directives

94 Outline Vulnerability of people with dementia inherent situational pathogenic Strategies in Austria and Germany Austria Germany Bavaria Advance Directives in Germany A Pilot Study in Bavaria Questions to Norway

95 Questions to Norway Are people in Norway more open and aware than in Germany and Austria for innovations?

96 Questions to Norway Are people in Norway more open and aware than in Germany and Austria for innovations? Is the infrastructure in Norway better than in Germany and Austria?

97 Questions to Norway Are people in Norway more open and aware than in Germany and Austria for innovations? Is the infrastructure in Norway better than in Germany and Austria? Is money the crucial fact which determines the quality of offers and programmes in Norway and other Scandinavian countries?

98 Thank you for your attention! Contact: