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How to Help Tina?

SDM in people with dementia

Lu, Hsiao-Chun	Celina Rosery
Chen, Ching-Yi	Jana Barbara
Cui, Jia-Wei	Judith Kinkel

Outline

●Case intro

●Introduction to dementia

●Introduction to the Betreuer system in Germany & Taiwan

●Problems to solve

●Solutions

●Conclusion

“Tina W. with dementia is ﬁercely independent. Above all, she insisted upon remaining in her own home. She believed the she could cope without assistance, and refused to admit carers. In fact, only with such care could she be sustained in her own home. Her son sought a court order. Tina W. declared that she much loved her son, but did not need a representative and did not wish him to be appointed. The son was appointed as a Betreuer with powers to ensure that carers would be admitted and could properly perform their functions – or the son is appointed as an assistant, because otherwise her overriding desire to remain in her own home would not be sustainable.

Introduction to Dementia

●A syndrome resulting from acquired brain disease; most patients are elderly

●Characterized by a progressive decline in memory and other cognitive domains (i.e., language, executive function, complex attention, etc.)

●When severe, it can interfere with daily life and one’s independent functioning

Introduction to Dementia

●No known cause & cure for degenerative dementia

-Neurodegenerative: progressive degeneration and/or death of nerve cells *incurable

-symptoms associated with dementia continue to progress in severity until death

● Treatments focused on providing care and help, rather than ﬁxing the underlying neuropathological problem

Introduction to German Betreuer System and Dementia

Equal recognition before the law

→§1896 BGB appointment of a Betreuer:

-Dementia → mental disabilities

-Necessity

-The Betreuer may only be appointed for areas of responsibility in which the Betreuung is required

-self-determination

→supported decision making

Introduction to Taiwan Betreuer System and Dementia

Adult Guardianship System in Civil Code

●From Sec. 1110-1113-1

●Many restrictions, since most of the regulation is based on child guardianship

●Autonomy is seriously stripped

Senior Citizen Welfare Act (Focusing on the Generic Issues)

●Sec. 13, 14

●Obligation of government to helping the elderly apply for guardianship

●Suggestion of issuing a trust to protect property

Introduction to Taiwan’s System and Dementia

Mental Health Act

●Not really focused on dementia

●Compulsory mediation: only in very serious conditions

Act to Implement CRPD

●Introducing CRPD to Taiwan legal system

●Providing principles of human-centered SDM

●Contradiction with MHA / Civil Code

Framework and Interaction

Civil Code	Senior
	Citizen
Financial	Welfare Act
Financial
KYC rules

	CRPD Act	Mental
	CRPD Act	Health
		Health
		Act

Property-based protection Dementia patients’ will

Contradiction between restriction and autonomy

Problems to Be Solved

●Communication Barrier

●Emotional issues

●People not familiar with the Betreuer system

●Reluctance to receive help

●Conflicts between the patient’s will and the situation

Communication Barrier

Problem:

Due to dementia, Tina may not be able to build mutual understanding with us, and there may be a gap between what she knows and what we know.

Possible Solutions:

●Utilize tools e.g. translator, simpliﬁed language, pictures

●Seek help from others who are able to communicate with the patient / people who the patient trusts (e.g. close family members / friends)

●Look into Tina’s biography to understand how she makes decisions and what she values

Communication Barrier

Possible Result:

We meet Tina and her son. Thanks to her son’s help, and by using some tools (e.g. pictures and diary) to understand Tina’s mind , and some other records that show how she usually reacts in the face of legal problems, as well as by interviewing Tina’s best friend, we may successfully help Tina understand the tasks of a legal guardian, and piece together Tina’s true will.

Emotional Issues

Problem:

Due to dementia, Tina may undergo serious emotional ﬂuctuation,s which can make her easily distracted from the meetup and discussion.

Possible Solutions:

●Before the interview :

○Double-check with Tina or her family whether there are things that may aﬀect Tina’s emotional status, or trigger negative responses

●During and after the interview:

○Make sure there are no emotional triggers in the environment

○Be a good listener: patients with dementia may feel that people do not often listen to them or respect them, so paying more attention to their words can make them feel more comfortable

○Person-centred approach: empathy

○Unconditional positive regard

Emotional Issues

Possible Results:

During the ﬁrst several meetups, Tina usually gets irritated or frightened due to her dementia. However, we start to check with her family about her condition, and remove the possible emotional triggers before meetings, and the situation gets better afterwards, with the discussion not interrupted so frequently. Throughout the conversation we treat Tina with respect and act emphatically, patiently and with positive regard.

Unfamiliarity with the Betreuer System

Problems:

Possible Solutions for Tina’s son

Possible Solutions for Tina

Tina’s son, originally appointed to be Tina’s Betreuer, is unfamiliar with what a Betreuer should do, and he also has some misunderstandings about the Betreuer system. Tina doesn’t understand the Betreuer system as well, and that’s part of the reason why Tina doesn’t want to get a Betreuer.

Have a person with professional knowledge be the betreuer (Japan)

Make the family member eligible

●Oﬀer courses and resources to help Tina’s son understand the Betreuer system

●Provide legal, psychological counselors to help Tina’s son

Use brochures, placards, pictures and videos to help Tina understand the system

Provide a hotline for Tina once she has problems or questions to ask

Explain the legal basis and make the complaints system accessible to Tina (Court)

Prepare reminders that point to all the things she needs to know (dementia)

Unfamiliarity with the Betreuer System

Possible Results:

With the help of courses and counselors, Tina’s son is enriched with the knowledge of the Betreuer system. He is also conﬁdent that he can do the job well. After a social worker and counselor visited and explained the system to Tina, she is more familiar with the Betreuer system and also understands how to ﬁle a complaint if her right is harmed under the Betreuer system.

Reluctance to receive help

Problem: Although Tina has shown very evident symptoms of dementia, she still denies her disease and refuses to get help.

Possible Solutions:

Ask the patient if he/she has any physical or mental discomfort and take him/her to the doctor whose speciality is related to the symptom he/she stated

→Ensure the patient feels that people care about what he/she feels

→Let relevant authorities (e.g. doctor) release the fact that the patient needs external help for his/her symptoms

Avoid negative expressions of the patient’s perceivable symptoms

→e.g. Don’t say “You’re old and forgetting everything!” when the patient forgets something that seems simple or normal.

Reluctance to receive help

Possible Results:

Tina originally kept denying her disease. But after Tina’s son brought Tina to the hospital to meet the doctor whom Tina is familiar with and trusts, and with suggestions from her close friend, she gradually accepted her situation and stopped denying that she has a condition.

Conflict between the patient's will and the current situation

Problem: Tina does not want to give up her home, she refuses any external oﬀers of help.

Possibilities to ﬁnd a solution pertaining to Tina's will could be:

Question the patient's own will Support from the patient's conﬁdants

Conclude about the patient's own will based on previous decisions/ documents such as living wills, etc.

Support from/ connection to professionals (doctors etc.) with regard to understanding the disease

Appreciative interaction; emphasis on the support function as legal guardians

Conflict between the patient's will and the current situation

Possible Results:

After being counseled, educated and supported in her decision-making by professionals as well as friends and family members, Tina agreed with her son to continue living in her home but to install some supportive measures, such as a carer who will move to Tina’s house to support her. Tina's son is appointed as legal guardian. Furthermore Tina will stay in contact with a social worker who will track her condition frequently and will install further measures when necessary. Tina was also informed about possible hotlines and counselling centres that could give her information and support in case of questions or problems.

Conclusion

➔Dementia can have a negative impact on supported decision making, but the impact can be neutralised.

➔The patient may be reluctant to receive help, but conversation contributes more than forcing and humiliating.

➔Person-centred interviewing (congruence, empathy, respect) (C. Rogers)

➔Patience, respecting a patient’s dignity and will, as well as trusting that he/she deserves autonomy is the core value to deal with the problem.

Conclusion

➔Uncertainty about the care system can be a problem on the part of the person being cared for as well as the caregiver. This requires education and training on both sides.

➔Acting in accordance with the patient's will poses many challenges, especially in practice. It requires interdisciplinary

cooperation, respect for the patient's will
and awareness of possible changes (legal
basis, disease development, decisions)	27
	27

Q&A

•Q: Does the cultural diﬀerence inﬂuence the solutions applied to this case? Like in Taiwan, the elderly are not easily persuaded by the descendants?

•A: It does. That’s why we resort to professionals to help persuade the elderly members of our family. It can also avoid potential risk of over-emotional conversations that might lead to humiliation or conﬂict.

Q&A

•Q: How should a judge reach a verdict when it comes to this case, with the conﬂict between the patient’s will and the real situation?

•A: We should take the patient’s will as the ﬁrst priority, while there must be some limitation to strike a balance between the self-willingness and the best interest of a patient (sometimes they conﬂict). We think it is more proper to decide based on two criteria - whether the patient’s will will threaten the patient’s health and safety, and whether the patient’s will will jeopardise others’ safety (public interest). If either condition is met, then we shall set a boundary for the patient’s will. Of course, what other limitations should be in placed can be further discussed.

References

American Speech-Language-Hearing Association (n.d.). Dementia (Practice Portal). Retrieved May, 26th, 2021, from www.asha.org/Practice-Portal/Clinical-Topics/Dementia/.

Bundesministerium der Justiz und für Verbraucherschutz. (Stand 06/2020): Betreuungsrecht. Mit ausführlichen Informationen zur Vorsorgevollmacht. <www.bmjv.de/SharedDocs/Publikation/DE/Betreuungsrecht.pdf?_blob=publicationFile&v=10 > Berlin.

Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz. (2019): Demenz das Wichtigste. Ein kompletter Ratgeber. 8. Auﬂage. Berlin

Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz. (2019): Was kann ich tun? Tipps und Informationen bei beginnender Demenz. 7. Auﬂage. Berlin

References

Related Regulation, Collected by Taiwan Dementia Society (TDS), last visited in 6/11 /2021, http://www.tds.org.tw/ap/link_list.aspx?bid=40

Civil Code, Law and Regulation Database of ROC, last visited in 6/11 /2021, https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=B0000001

Act to Implement CRPD, Law and Regulation Database of ROC, last visited in 6/11 /2021 ,https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=D0050194

Mental Health Act , Law and Regulation Database of ROC, last visited in 6/11 /2021

,https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=L0020030

Senior Citizen Welfare Act , Law and Regulation Database of ROC, last visited in 6/11 /2021

https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=D0050037

	Introduction to the
3	Betreuer System
3	Policy in Germany and Taiwan

1	Case Intro
	What’s wrong with Tina