Press Release: Dementia Public Consultation – MSA sends feedback

The Malta Sociological Association has submitted the following feedback to the Ministry for Senior Citizens and Active Ageing (Social Care Standards Authority) regarding the public consultation on  Social Regulatory Standards – Residential Services for persons living with dementia

 “The Malta Sociological Association welcomes the fact that public consultation about residential services for persons living with dementia is being carried out by Government.

 The MSA has the following feedback: 

 While Standard 1: Residents’ Rights is certainly a step in the right direction, conceptually speaking, human rights are different from human needs, and as such, the Standards make no reference to ‘advance care planning’. This refers to people thinking about, discussing and recording their wishes and decisions for future care. It is about people planning for a time when they may not be able to make some decisions themselves. In other words, advance care planning involves people making plans about what they want to happen while they are alive. This is different from people making plans about what should happen when they die. This is why this is especially important for people with dementia. Two forms of advance care planning which the Standards are best to include are the following:

 

Making statements about future needs and wishes. People can say what they would like to happen if they lose capacity to make decisions in the future. This can cover care, support and treatment. While these statements don't need to be written down, it is best to do this. It is also important to decide the best place to keep these statements so that the right people can refer to them when needed. For example, general practitioners could keep a copy as could a relative or friend, and it might be attached to a care plan. Examples include: I would want to stay in my own home as long as possible / I would only want to be supported with personal care by women / I would want to continue to have a glass of wine with my evening meal.

 

Making advance decisions to refuse treatment. Some advance statements could be about medical treatments that a person would not want, were they to lose capacity to make decisions about these in future. Some examples include: I would not want a blood transfusion because of my religion / I would not want any further chemotherapy for my cancer, in the event of my cancer reaching stage IV.

 

Quality Indicator 5: The service provider shall appoint an events coordinator and shall encourage the residents to actively take part in planning and participation in social and leisure activities is again a step in the right direction. However, it is highly lamentable that - despite the fact that learning is a fundamental human right - the Standards consider persons with dementia as an ‘education wasteland’.  Indeed, notwithstanding the fact that numerous research studies demonstrated people with dementia can learn something new, the Standards treat life with dementia in residential care facilities as incompatible with learning. In other words, residential care facilities for persons with dementia are typically viewed as settings where older adults go to spend their final days, not to fulfil their potential. As ageing experts are aware, most studies on learning and dementia to date have had an outspoken focus on how rehabilitative interventions can be implemented in order for people living with dementia to relearn information or abilities that they once knew. However, most care standards for persons living dementia have been occupied with containment rather than expansion, on retaining familiar activities, rather than enabling novel learning experiences. Lamentably, these Standards are no exception, something which we find very peculiar indeed, since the Maltese academic community is fortunate enough to include an academic geragogist (Marvin Formosa), something that few other countries have at their disposal. 

 The MSA is also proposing that this policy process employs a continuous social impact assessment (SIA) process, to ensure greater outreach and deliberation with stakeholders, through both quantitative and qualitative research methods, and subject to independent peer-review.  An SIA could produce valuable evidence for policy formation and implementation.”