Worldwide, around 50 million people have dementia (www.who.int), 10 million in Europe. Projections indicate an exponential growth in the following decades, increasing the severity of cases (2019 Alzheimer Europe Yearbook, Estimating the prevalence of dementia in Europe). Most advanced stages of the disease occur in GDS phases 6 and 7 (Global Deterioration Scale for the Assessment of Primary Degenerative Dementia). In Phase 6 there is a severe cognitive decline, incontinence, delirium, compulsions, anxiety or agitation, among others, and people require extensive help to do daily activities. In Phase 7 there is very severe cognitive decline, lost of the ability to speak or communicate and psychomotor skills, like the ability to walk (www.dementiacarecentral.com). The number of persons with advanced dementia (PwAD) living and receiving care in domiciliary environments is growing as their life expectancy grows and due to the deinstitutionalization trends where, according to the Quality of Life (QoL) Model, they should stay at their home as much as possible. AD at HOME project was launched with the main objective of increasing the competences (attitudes, knowledge, skills) of Carers on how to improve Quality of Life of Persons with Advanced Dementia (GDS 6-7) in domiciliary environments. Specific objectives that the Project achieved: • Awared the target group about the effectiveness and impact of proper care for the QoL of both PwAD and Carers • Created and transfered guidelines and tools on how to; Implement existing innovative strategies for improving QoL of PwAD (GDS 6-7) in domiciliary environments, focusing in Non-Verbal Communication and Sensorial Stimulation. Adapt the main care tasks of PwAD (GDS 6-7) in domiciliary environments Apply Assistive Technologies for improving QoL for PwAD (GDS 6-7) in domiciliary environments. • Increased competences of Carers for self-care to help them face the ethical challenges of caring, reduced the burden and prevented their burn out. According to that, the next results were developed: I.O.1 Co-Designed Training Scheme A Training Scheme of the “AD at Home” Training Program was developed with the direct involvement of potential END USERS (CARERS) as “experts” of the daily needs of PwAD in advanced stages (GDC 6-7) and their own needs. This way, END USERS participated in the design process, helping to assure that the results achieved met all the identified needs. I.O.2 Training Package on Non-Verbal Communication and Sensorial Stimulation for Persons with Advanced Dementia in Domiciliary Environments (HUMANITUDE) A Training Package was developed including information and applied knowledge about how to implement existing innovative solutions in the field of Non-Verbal Communication and Sensorial Stimulation for PwAD (GDS 6-7) in domiciliary environments. I.O.3 Training Package on Adaptation of Care Tasks to Advanced Dementia in Domiciliary Environments (ALZ.DERNIGI) A Training Package was developed including information and applied knowledge about how to adapt the main Care Tasks to Advanced Dementia (GDS 6-7) in domiciliary environments I.O.4 Training Package on Assistive Technologies for improving the Quality of Life of Persons with Advanced Dementia in domiciliary environments (IAT) A Training Package was developed including information and applied knowledge about existing Assistive Technologies which can improve the Quality of Life of Persons with Advanced Dementia (PwAD, GDS 6-7) and Informal Caregivers in domiciliary environments Finally, the aforementioned “AD at HOME e-Training Platform” (I.O.5) was developed 5 NATIONAL MULTIPLIER EVENTS were organized, where all the project results were introduced to the main national stakeholders (36 in Slovenia, 24 in France, 43 in Turkey, 30 in Spain and 10 in Germany). VALIDATION PILOT ACTIONS were implemented in all countries with 80 CARERS of PwAD (20 in Spain, Slovenia, Turkey and France) where all the Training Packages including Training Materials and Experiential Training Activities were put into practice and tested We can distinguish among different kind of impacts: Short Term: - It increased the competences of 80 CARERS (20 in Spain, Slovenia, Turkey and France) through their direct participation in the Pilot Validation Actions - 2.500 CARERS, Professionals working with Persons with Dementia and other Stakeholders (500 in Spain, Slovenia, Turkey, France and Germany) were aware, through dissemination actions Long Term: - During 5 years after the project completion, thanks to the work to be done by the Support Units, the project will increase yearly the competences of 200 persons including CARERS (50 in Spain, 50 in Slovenia, 50 in Turkey and 50 in France) through their participation in Training Courses - Also in the long term, 2.500 CARERS, Professionals working with Persons with Dementia and other Stakeholders (500 in Spain, Slovenia, Turkey, France and Germany) will be aware yearly during the 5 years after the completion of the project
ADatHOME is launched with the main objective of increasing the competences (attitudes, knowledge, skills) of Carers on how to improve Quality of Life of Persons with Advanced Dementia (GDS 6-7) in domiciliary environments. Specific objectives: •To aware the target group about the effectiveness and impact of proper care for the QoL of both PwAD and Carers. •To create and transfer guidelines and tools on how to -Implement existing innovative strategies for improving QoL of PwAD (GDS 6-7) in domiciliary environments, focusing in Non-Verbal Communication and Sensorial Stimulation. -Adapt the main care tasks of PwAD (GDS 6-7) in domiciliary environments -Apply Assistive Technologies for improving QoL for PwAD (GDS 6-7) in domiciliary environments. •To increase competences of Carers for self-care to help them face the ethical challenges of caring, reduce the burden and prevent their burn out. There will be a Training Program built by 3 Training Packages, covering the next most relevant areas: i) Non-Verbal Communication and Sensorial Stimulation; ii) Adaptation of Care Tasks; iii) Assistive Technologies. The implementation of the Training Packages in domiciliary environments will be enhanced by the development of an e-Training Platform.
The direct intervention with people with dementia and their main caregivers has shown us that the most advanced phases are those with the hightest personal and material deficiencies. The limited offer of public places in residences and the high monthly payment of private ones, adding to that the still existing rejection to access to this type of centers based on "ethical principles", means that care ends occuring at home, being the relatives those who embrace the role of primary caregivers. All this leads us to the need of providing tools to improve both, the quality of life of users (people with advanced dementia) and their own (caregivers). There is specific bibliography for this advanced phase in specific areas, but we have not found a training package that addresses all subjects that caregivers themselves identify as relevant, it's the most innovative part of ADatHOME. We had the intention of having the continuous participation of the beneficiaries themselves so that the materials fit as much as possible, adding to that the experiences of the rest of organizations. In conclusion, we want to be able to meet the real needs of non-formal caregivers of people with advanced dementia that find themselves hopeless most of the time.