PL1.1. The impact of dementia on the whole family

ROBERTS Chris, GOODRICK Jayne

When a life changing diagnosis of dementia is given, it is also given and affects the whole family, they all have to to 'live with dementia'

This is particularly relevant to Working age people who usually have children at home full time, mortgages, bills and the stress of general life as well as affecting older people.

Dementia seriously challenges the whole family dynamic relationships and can cause total breakdown as well as a lot of guilt and blame.

PL1.2. Home care in dementia – relief for caregivers and support for care-receivers

GRÄβEL Elmar

Persons with dementia are in need for support, family caregivers are in need for relief. The first statement stems from the fact that there is no causal treatment for degenerative dementia and therefore dementia is a chronic process. Thus family caregivers are confronted with multiple sources of burden. In the first part of the talk a model will be presented which organizes the various support services in dependence on the extent to which persons with dementia and/or theirs caregivers will profit. The spectrum ranges from caregiver skill training to support group for persons with dementia in early stage. In the second part of the talk the effects of several support services outlined in empirical studies will be explained. Finally the effectiveness of non-pharmacological therapies for persons with dementia as part of support services will be demonstrated.

PL1.3. The European Joint Action on Dementia and its focus on dementia-friendly communities and initiatives

BLOOD Imogen

Imogen Blood & Associates, in partnership with Innovations in Dementia, were commissioned by the UK Government to review and present the evidence on dementia friendly communities (DFCs) from Europe and beyond as part of Workpackage 7 of the EU Joint Action on Dementia. Their review was informed by engagement with people with dementia (including the European Working Group of People with Dementia) and others involved in developing DFCs across Europe.

In this presentation, Imogen will present:

. The review’s proposed definition of DFCs;

. Key messages from people with dementia in relation to what does – or does not – make a community ‘dementia-friendly’;

. And a model which summarises the key components of an effective DFC, based on our review of what works.

PL1.4. Ethical and legal considerations in the care of people with dementia at home

KLIE Thomas

Even if life and care in the privacy of one’s realms are preferred by most individuals, especially people with dementia and their caring relatives are often exposed to particular strains. At this point questions regarding human rights issues in care and fairness in the distribution of care tasks arise. Central and southern European systems for nursing care insurance particularly presuppose the willingness of relatives to care and work with pre-modern family concepts, on which state support is often based. How can conditions of a good living with respect to care at home be established for people with dementia as well as for their relatives? A major perspective can be seen in creating a mix of informal, professional and voluntary help. Hereby the concept of the Caring Community in some places serves as a model for a hybrid conception of domestic care. But also an efficient care and case management infrastructure is of high importance when there is the claim to treat people suffering from dementia with respect, to avoid indignity, to ensure professional care and to enable a participation-oriented life.