Information on advance care planning on websites of dementia associations in Europe: A content analysis

Figures & data

Table 1. Overview of the deductive categories and themes.

Defining ACP	Medical and legal aspects of ACP	Quality of life, personal, social, and practical aspect of ACP
Definition of ACP	Legal frameworks Legal representatives Documentation of decisions Care and medical treatment preferences	Personal values and life goals Communication with family Communication with health professionals Documentation sharing Timing Meanings and consequences of serious illness scenarios Uncertainties of serious illness scenarios

Table 2. ACP themes identified per dementia associations’ website¹.

Dementia Associations (Country)	Defining ACP	Legal and medical aspect of ACP				Quality of life, personal, social, and practical aspect of ACP							Total number of themes identified
	Definition of ACP	Legal frameworks	Legal representatives	Care and medical treatment preferences	Documentation of decisions	Personal values and life goals	Communication with health professionals	Communication with family	Timing	Uncertainties	Meanings and potential consequences	Documentation sharing
Alzheimer Austria (Austria)		✓	✓	✓	✓					✓			5
Ligue Nationale Alzheimer Liga (Belgium, national umbrella association)													0
Ligue Alzheimer (Belgium, region Wallonia)													0
Alzheimer Liga Vlaanderen (Belgium, region Flanders)	✓					✓	✓						3
Udruženje AiR (Bosnia and Herzegovina)													0
Alzheimer Croatia (Croatia)			✓	✓					✓				3
Ceská alzheimerovská spolecnost (Czech Republic)			✓	✓	✓				✓	✓	✓		6
Alzheimerforeningen (Denmark)				✓	✓	✓	✓	✓	✓		✓	✓	8
France Alzheimer (France)													0
Deutsche Alzheimer Gesellschaft (Germany)	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	12
Alzheimer Society of Ireland (Ireland)		✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	11
Jersey Alzheimer’s Association (Jersey)													0
Association Luxembourg Alzheimer (Luxembourg)													0
Malta Dementia Society(Malta)													0
Alzheimer Nederland (Netherlands)		✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	11
Norwegian Health Association (Norway)			✓					✓	✓	✓	✓		5
Polish Alzheimer’s Association (Poland)													0
Confederación Española de Alzheimer (Spain)		✓	✓	✓	✓				✓			✓	6
Fundación Alzheimer España (Spain)													0
Alzheimer Sverige (Sweden)		✓		✓									2
Demensförbundet  (Sweden)													0
Alzheimer Suisse (Switzerland)		✓	✓	✓	✓	✓	✓	✓	✓		✓	✓	10
Türkiye Alzheimer Dernegi (Turkey)				✓									1
Alzheimer Scotland (UK)		✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	11
Alzheimer Society (UK)	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	12
Alzheimer Europe (European)	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	✓	12
Total number of websites addressing theme	4	10	12	14	11	9	9	9	12	9	10	9

¹Several associations from the same country were included if: (1) the national association referred us to additional regional associations, or (2) if two association from this country were affiliated with Alzheimer Europe.

Figure 1. Definition of ACP per country.

*All definitions are forward-only translations from the original websites.

**Definitions from: ( Alzheimer’s Society, 2021b; Alzheimer Europe, 2021; Alzheimer Liga Vlaanderen, 2021; Deutsche Alzheimer Gesellschaft, 2021 ).

Table 3. ACP themes identified on the dementia associations’ websites.

Themes	Example quotes	Number of websites addressing the theme	Number of excerpts per theme
Defining ACP
Definition of ACP	‘Working towards the future and thinking about yourself. We call this advance care planning. This concerns agreements about who can take up which (care) tasks, about the management of money and goods and so on. You need to look ahead in the interests of the person with dementia and in the interests of yourself as a caregiver.’ (Alzheimer Liga Vlaanderen, 2021)	4	13
Legal and medical aspects of ACP
Legal frameworks	‘There are several laws which aim to enable decision making and protect the rights of vulnerable adults, including people with dementia. These are the Adults with Incapacity (Scotland) Act 2000; the Mental Health (Care & Treatment) (Scotland) Act 2003; and the Adult Support & Protection (Scotland) Act 2007. There is a short description of the main points of each of these laws below.’ (Alzheimer Scotland, 2020)	10	705
Legal representatives	‘If a person is unable to take care of his or her legal matters, to cover their living needs and to assert claims (care allowance, social assistance, benefits, etc.) due to an intellectual disability, they can be represented by a close relative.’ (Alzheimer Austria, 2021)	12	274
Documentation of decisions	‘You can formulate your wishes for care and nursing in a so-called care will.’ (Alzheimerforeningen, 2020a)	11	88
Care and medical treatment preferences	‘Therefore, if the patient is still able to act in a responsible way, he/she should decide on matters related to artificial nutrition and resuscitation.’ (Czech Alzheimer Society, 2015)	14	89
Quality of life, personal, social and practical aspects of ACP
Personal values and life goals	‘[…] getting to know the person’s values, wishes and beliefs more generally can help in the future when decisions need to be made on their behalf.’ (Alzheimer Scotland, 2021)	9	73
Communication with health professionals	‘It is usually very difficult for medical laypersons to have an overview of the various treatment situations that can occur and to describe the measures that correspond to their own values for each case. Therefore, consultation with a physician or other competent person or organisation is recommended in order to gain clarity about what is desired and to avoid contradictions between individual definitions.’ (Gesellschaft, 2019)	9	67
Communication with family	‘It can be difficult to discuss these matters with the people you love. You might not want to, and that is understandable. Still, it is important to do it. If you don’t, a judge may later determine who can make decisions for you. Postponing is therefore not wise.’ (Alzheimer Nederland, 2021)	9	49
Documentation sharing	‘Once the document has been drafted, there are two ways to ensure that advance directives are taken into account: Register the document. This is the most reliable and safe way. By registering it, it becomes available to the medical centre and its team of professionals. If the document has been signed in front of a notary, the notary will be in charge of registering it. If it has been signed in the presence of witnesses, it can be registered by the person concerned, one of the witnesses or a representative.’ (Confederación Española de Alzheimer, 2019)	9	36
Timing	‘People with dementia are no longer able, at a certain stage of the disease, to make appropriate decisions, in particular regarding medical procedures, care and support. By writing advance directives early enough, they can formulate their decisions and specify their wishes in anticipation.’ (Alzheimer Suisse, 2020)	12	58
Meanings and potential consequences of serious illness scenarios	‘Your doctor and nurse can explain some of the care and treatments that can arise with advanced dementia such as: the use of a ventilator (a machine to breathe for you if you stop breathing); the use of artificial nutrition (tubes which feed you if you can no longer eat or swallow); and the use of Cardiopulmonary Resuscitation, CPR, if your heart stops.’ (The Alzheimer Socitey of Ireland, 2018)	10	58
Uncertainties of serious illness scenarios	‘It is difficult to know how quickly and in what manner the dementia symptoms will develop. All people are different. For some, the symptoms remain stable for a long time. Others have some good days and some bad days.’ (Norwegian Health Association, 2021)	9	34
Emerging themes
Reviewing ACP	‘You can change any advance statement that you make at any time. If you have made a written advance statement you must make sure that all copies have been updated.’ (Alzheimer’s Society, 2021a)	7	13
Difficulties of ACP conversations	‘Most people have a hard time talking about death. Many thoughts and feelings therefore remain unsaid. But if one does not talk about death, it may come to influence negatively the relationship between the dementia sufferer and the relatives.’ (Alzheimerforeningen, 2020b)	6	15
Consequences of not doing ACP	‘In the absence of advance directives. In some cases, the diagnosis is made when the disease is already advanced and the ability to discern significantly reduced. The person with the illness will thus not be able to write his/her advance directives. It also happens that a person refuses such directives. When it comes to making decisions about this person, family and close ones will be consulted.’ (Alzheimer Suisse, 2020)	5	18
Decision-making capacity	‘When a person has a diagnosis of dementia, the solicitor may – and best practice suggests they should – ask for a medical opinion to confirm the person has the capacity to understand what they are signing, at the time of signing it.’ (The Alzheimer Socitey of Ireland, 2021)	9	27

Table 4. Website features identified per dementia associations’ website.

Dementia Associations (Country)	Accessibility features								Readability features
	Clear headings	Clear home link	Clear site map	Print option	Clear hyperlinks	Text to speech option	Text size option	Contrast option	Pictures	Videos	Simple language	Abbreviations are defined	Jargon is defined
Alzheimer Austria (Austria)	✓	✓			✓		✓					✓	✓
Alzheimer Liga Vlaanderen (Belgium)	✓	✓			✓						✓	✓	✓
Alzheimer Croatia (Croatia)	✓	✓		✓	✓				✓		✓	✓	✓
Ceská alzheimerovská spolecnost (Czech Republic)	✓		✓		✓						✓	✓	✓
Alzheimerforeningen (Denmark)	✓				✓				✓		✓	✓	✓
Deutsche Alzheimer Gesellschaft (Germany)	✓		✓		✓		✓		✓			✓	✓
Alzheimer Society of Ireland (Ireland)	✓	✓	✓		✓				✓	✓	✓	✓	✓
Alzheimer Nederland (Netherlands)	✓			✓	✓					✓	✓	✓	✓
Norwegian Health Association (Norway)					✓							✓	✓
Confederación Española de Alzheimer (CEAFA) (Spain)	✓				✓				✓			✓	✓
Alzheimer Sverige (Sweden)	✓				✓						✓	✓	✓
Association Alzheimer Suisse (Switzerland)	✓	✓		✓	✓				✓			✓	✓
Türkiye Alzheimer Dernegi (Turkey)					✓						✓	✓	✓
Alzheimer Scotland (UK)	✓			✓	✓						✓	✓	✓
Alzheimer Society (UK)	✓			✓	✓	✓					✓	✓	✓
Alzheimer Europe (European)	✓	✓	✓		✓		✓					✓	✓

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