Until there are cures, treatment must concentrate on helping people with Alzheimer’s and other dementias live with as much dignity and independence as possible. At the onset, this can mean providing reminders and a safe environment. As the disease progresses, caregiving responsibilities increase dramatically.
People with dementia have several care options. They may remain at home and be cared for by family members, with or without paid assistance. They may be taken to a day centre that specializes in dementia care, or they may be housed in a healthcare or residential long-term care setting (Warner et al, 1998).
Home Care Service:
Domestic Support, domiciliary nursing, auxillary nursing
Primary Care Teams:
General Practitioner, nurse therapist, assessment and care planning
Social workers, assessment and carte planning
Support worker in own home, social care, hospital based( decreasing)
In own home, unit / centre
Psyhogeriatrician, geriuatrician, neurologist
Psychiatric units, geriatric and general
State(decreasing), for profit, voluntary, religious
Domiciliary, support workers in own home
Throughout the continuum of care, it is critical to keep the individual person at the forefront. A worldwide movement is growing to maintain the “personhood” of dementia patients, so easily lost in the language of neurological diagnosis, management of symptoms, financial costs and care arrangements. As Tom Kitwood, Leader of the Bradford (UK) Dementia Group, explained:
A radically different approach has been gathering momentum, bringing with it a quiet transformation of attitude and care practice . . .in many countries throughout the world. For example there is an approach in Sweden termed ‘integrity-promoting care’ (Brane 1989); in the French-speaking parts of Europe there is now a strong movement to ‘humanise’ dementia (Grosclaude 1993; Ogay 1996); in Australia care has advanced in many ways, with the creation of at least one comprehensive framework for enhancing quality of life (Garratt and Hamilton-Smith 1995); in the USA there is the Alzheimer Care Enrichment philosophy (Alzheimer’s Association 1997); and there have been many other powerful contributions to theory and practice (e.g. Post 1995; Sabat 1998). Many of us in the UK have come to speak of person-centred care. . . . One of the most striking facts about this convergence is that almost identical conclusions have been reached by virtually independent routes. . . .The beginnings of a paradigm can now be discerned: while its principles and practices aim to be thoroughly compatible with the well-attested findings of biomedical science, the central difference is that its principal focus is the person, not the brain.
– Tom Kitwood, ‘Dementia and Personhood,’ Dementia in Focus: Research, care and policy into the 21st century. Centre for Policy on Ageing.
Sometimes, she says something – a little joke or a comment – that shows me she is still there. Buried under that disease, a piece of my mother still survives. It’s that little piece that remains, the memories of who she was and those soft, familiar hands that keep me going.’
Marge W. (How to Care for Aging Parents)
Across all Member States, the majority of people with dementia are living at home – 69 percent according to Alzheimer Europe.
In countries such as Greece, where traditional family structures remain strong, cultural forces are likely to mitigate against other types of arrangements. In other countries, home care will most likely predominate, if only for economic reasons. The cost of caring for growing numbers of dementia patients in nursing facilities or hospitals is extremely prohibitive.
Caring for a dementia patient at home has an enormous impact on a family. There are lifestyle changes for the carer, changes in the relationship between carer and patient and changes within the physical home environment.
The carer’s economic and social life will be disrupted. Carers may, in many cases, have to resign from employment with consequent loss of earnings and socialisation that goes with employment. Recognising the impact on carers, some countries are trying to offer a battery of support.
There are practical care issues, such as safety within the home, monitoring movements around-the-clock, feeding and general health, and preserving other functional activities such as walking, talking and reasoning for as long as possible.
As the disease progresses, the carer assumes greater responsibility for the delivery of many everyday functions, which can fundamentally alter family relationships in ways that are neither easy or straightforward. The carer may, in the end, become not just the functional caretaker, but the legal agent of the dementia patient. Parents and their adult children reverse their traditional roles which can be painful and difficult for both.
Volunteer caregivers who can assist family caregivers and provide respite can contribute much to the care of dementia sufferers. The tradition of voluntary services varies considerably between EU countries. In Greece, for example, volunteerism has not developed because the family structure remains very strong. (Maria Samartzi) Volunteerism in the Scandinavian countries is not developed to the extent that it is in the UK. (ETAS) A pilot project in Denmark by Dane Age shows that families were very reticent to accept volunteer caregivers. (Rasmussen, 1999)
There is still a great deal of ignorance about Alzheimer’s disease and other dementias associated with ageing. Primary care physicians may know little about diseases of ageing. Diagnosis may be late. Family members may be reluctant to ask for help or be unable to articulate the kind of help they need. Also, the continuing care system may be difficult for family members to understand or access. And without an intimate knowledge of each family’s needs, professionals may offer the wrong kind of help. The need for expert guidance for carers and coordination of various services can be met by a consultant or specialised nurse.
The Dutch Alzheimer’s Association has recommended the introduction of an “Alzheimer consultant” to begin counseling family members as soon as a diagnosis is established. (Karla Peijs) In Sweden, the Dementia Nurse is a personalised advocate for individual patients and their families and in Denmark, Dementia Co-ordinators, who are specially trained nurses, are employed at the local level. In addition, home carers need information and support. Geriatric specialists could provide valuable assistance to family members and volunteers.
Groups such as Alzheimer Europe and individual organisations in each country are invaluable resources for dementia patients and their families and often serve as representatives or personal advocates. (See appendix for list of resources)
Not all dementia patients have family members who can care for them. They may be living alone, or family members may be unable to cope. Hence there is a need for various forms of institutional care in the early stages of the disease, which evolve in the nature of their care as the disease progresses.
Communal care facilities, such as the French Cantou and the English Domus, offer cost-effective long-term care alternatives to traditional hospitals. The facilities are essentially group homes with around-the-clock professional custodial care. While residents have their own rooms, communal living areas provide opportunities to socialise with staff and other residents and to participate in everyday activities like meal preparation. An additional benefit of these facilities is that they are sufficiently informal and “home-like” to allow for family members to participate in decisions about the elderly person’s care. This involvement has been shown to reduce carers emotional stress. (Ritchie 1995)
A comparative study of the Cantou and traditional long-stay hospitals shows, however, that the Cantou does not meet all patients’ needs. Rather there should be careful assessment of medical needs prior to initial placement so that the most appropriate facility (in terms of cost effective care) is chosen. (Ritchie 1995)
In Sweden, small housing units called Group Living have been presented as an alternative to traditional institutional care and it has been official policy to increase available places in these Group Living settings. Originally it was planned that approximately eight patients should be able to live the rest of their lives in these care facilities. However, experience has shown that with advancing dementia it may be necessary to move patients to traditional institutional care. (Johannson,1990)
Special Care Units (SCU) for Dementia in Nursing Homes
Special Care Units (SCU) for Dementia in Nursing Homes One of the reasons that dementia patients enter nursing homes or hospitals is because of unmanageable behaviour, such as wandering, hallucinations and delusions. The European Commission funded a multinational study of the effectiveness of Special Care Units for Dementia in comparison to traditional nursing homes in controlling those behaviours. The study suggested that SCUs can successfully control symptoms without increasing the use of psychotropic drugs or restraints. (Frisoni et al)
Traditional Long Term Care Facilities
Hospitals and nursing homes have long provided care for dementia patients, both those who require the kinds of ongoing skilled nursing and therapeutic services these institutions are designed to deliver and those who have no one else to care for them. It is estimated that senile dementia patients fill as many as half of all long-stay hospital beds in Western countries. (Ritchie 1995)
Despite their relatively high cost (compared to other continuing care arrangements), placement in these facilities is sometimes inadvertently encouraged by the structure of the healthcare reimbursement system. It is not uncommon for home care to be more expensive for the patient and family than institutional care.
There is a growing trend to adapt traditional long-term care facilities to the specific needs of dementia patients. This includes special care units, encouraging ‘community’ within the dementia patient population and involving family members more in care decisions.