Dementia

Cognitive function and dementia disorders in the elderly

Today it is estimated that there are about 26 million sufferers from Alzheimers disease (AD) world-wide. With an increasing aged population, that number is expected to be four times that of today by 2050. It is estimated that by 2025 the percentage of over-65s will raise from 15.4% of the EU population to 22.4%, which will be in correlation with a rise of AD patients. AD has profound impact both on the patient, the family and the community through the devastating effect of the disorder. The brain lesions give a progressive cognitive and functional decline from very mild cognitive decline, mainly memory difficulties to severe and distributed brain lesions resulting in severe care burdens and finally death.

Often AD is also complicated by BPSD (Behavioural and Psychic Symptoms in Dementia) including agitation, delusions and depression, symptoms often disturbing both for patients and caregivers. Furthermore, the care of AD-patients is a major concern for many local authorities both from a financial and staff perspective. Research in all AD area has during last decades given much valuable information concerning the genetics, basal pathophysiology, clinical presentation and treatment and epidemiology, and there is now a good knowledge of basal mechanisms in AD. From clinical point of view the introduction of drug treatment in AD is a major break-through and has been shown to improve both cognitive function and reduce the need of care. However, no biomarker or prophylactic treatment of AD ais established yet .

There are several important trends in dementia care in Västerbotten during the last decades. One of the most important can be summarized under the concept of ‘normalization.’ This means that the patient with Alzheimer’s disease and other dementing disorders should be regarded as ‘normal’ citizens living in a normal apartment, seeking medical care in primary care (GP). Furthermore, they are supposed to defend their own rights in court if the social welfare system did not provide their need of social services, similar to other persons in need of social support. The most prominent legal expression of this trend was the “ÄDEL-reformen” 1992 with the main intention to transform nursing homes to ‘ordinary living’ under the management of local authorities. An important part of this trend was the “de-medicalisation”, including ideas that if ‘healthy aspects of the elderly’ were primarily taken into account the decline in cognitive function would not be a problem.

Another expression of this trend was that if medical care was needed in the apartment provided by local authorities, called ‘special living’, this care would be provided without doctors in the organization and the patients were often regarded as guests. Thus, legally the local authorities are not allowed to engage doctors for the medical care and the idea is that the patient would seek his or her own GP.

Formally, the legal base still exists, but during the last five years this trend is decreasing in strength. Thus, a number of press and other public reports has revealed medical care of sometimes very low quality, partly because of lack of resources and medical knowledge but to a large extent due to low interest and attention of medical care by the management (“Guests do not need medical treatment”). However, in response to reports, the medical training of the staff in ‘special livings’ has increased prominently, special laws against mal-treatment have been put in force and there is an increasing attention also of the management of both the organization and content of the medical care.

Another important trend is that very few small group living facilities for demented persons have been initiated during the last five to seven years. The main arguments have been that they are too expensive and less rational for example when staffing the units. Several isolated group-livings have been shut down and the patients have been moved to larger units, often with the intention to have several small units in the same building, giving a small unit from the patient’s perspective but a large unit from staffing and education perspective.

A third important trend is that there is an increase in the number of demented patients but no similar increase in the funding for their care. Two routes have been mainly followed to manage this situation. First, the need of care is much more prominent today compared to some years ago in order to have access to nursing home care and other forms of institutional care. Second, there are several examples of various forms of increasing home care. Examples of this are the development of dementia care teams and nurses specialized in dementia care.

The introduction of pharmacological treatment in Alzheimer’s disease is another important recent trend in psychogeriatrics. This has given much more focus on the early detection of memory disturbances and it is evident that the pattern of referral to specialized psychogeriatric care is more and more focused on patients with minor cognitive decline. The clinical management of minor cognitive decline has developed considerably in recent years. Furthermore, today it is not uncommon that patients seek medical attention themselves, based on general public information and awareness on cognitive disorders among relatives. Those who are seeking medical advice themselves, are generally younger and with much less cognitive decline compared to those who were referred to specialized psychogeriatric care ten years ago.

There is also an increasing interest in BPSD (Behavioral and Psychological Symptoms in Dementia). Clinical activities, education and some research have developed during the last ten years and many nursing homes and group livings are active both in prevention and management of BPSD. However, still much is to be done especially in the field of BPSD since, for example, drug use is still inadequate in many dementia care settings and the levels of staff knowledge are still in many settings to sparse.

In Västerbotten there are also examples of interests in developing IT-support for dementia care. An example of this is DMSS® (Dementia Management Supporting System) which intends to support the clinical processes during dementia management. This is a product from computer science research and may be an example future clinical IT-support in dementia care.

To summarize, the development of psychogeriatrics in Västerbotten is affected by both general trends in the community, such as trend towards ‘normalization’ and budget restrictions but also by the advent of new medical diagnostics and treatment of dementia including examples of advanced IT-support.

The administrative responsibility for dementia care in Västerbotten is mainly public. The County Council (VLL) is responsible for open care, mainly early and uncomplicated cases, through Primary Care organization, advanced diagnostics and BPSD evaluation and treatment through a two clinics. As a regional authority the County Council is also responsible for the regional development of dementia care.

Dementia disorders are a group of disorders all characterized by a dementia state. This status includes development of memory deficiencies, signs of aphasia, agnosia and afasia(?) as well disturbances in executive functions. When these symptoms are significant and diminish the social and/or occupational capacity, and confusion is excluded, there is a dementia state.

Disease Process of Dementia
Figure 1: Disease Process of Dementia - 1

These symptoms are caused by organic disturbances in the brain neuronal function especially in the hippocampal and temporoparietal areas and a number of disorders may cause the cognitive decline. Most common is Alzheimer’s disease, which account for at least three quarters of all cases. It is characterize by an insidious onset and progression from very mild symptoms to finally a decorticated state. From a practical care perspective this can be illustrated by FAST, an established assessment method of cognitive decline. Other important dementia disorders are Dementia of Lewy body type and vascular dementia.

All forms of dementia disorders can also include BPSD (Behavioral and Psychic Symptoms in Dementia) and only 20% of all patients are free from BPSD. It includes delusions, hallucinosis, agitation state, hypermotoric state, day- and night rhythm disturbances, mood affection and anxiety states. The explanation of BPSD can be biological, personal, social factors as well as factors related to existential questions. Severe BPSD often requires in hospital care and advanced assessments and medical interventions. The processes of dementia disorders are illustrated in Figure 1.

Description and status of the Clinical Pathways for dementia

The local authorities (municipalities) are administrative responsible for short- and long-term care within sheltered living, through the Social Welfare Services. The principal steps in dementia disorders are:

  • Preclinical phases, i.e. a phase without clinical symptoms, but obvious pathology in the brain. Today mainly of research interest, but in future a possible phase of interventions;
  • Initial phase with diagnostic activities and initiation of treatment;
  • Out patients phase with treatment;
  • Relief care phase with both out- and in patients care, often in sheltered livings;
  • Long-term care in sheltered livings with prominent functional decline and prominent cognitive decline during all steps assessment and intervention in BPSD.

BPSD (Behavoioural and Psychis Symtom in Dementia) has the following cluster of symptoms:

  • Delusion
  • Hallucinosis
  • Hypermotoric symdroms
  • Agitations
  • Day and night disturban
  • Affective syndromes
  • Anxiety
  • Syndroms
Phases of dementia care
Figure 2: Phases of dementia care

The interpretation of BPSD is structured in following levels:

  • Biological level – Localisation of brain lesions and transmittor disturbances;
  • Psychological level – Psychological reaction altered by cognitive dysfunction and Psychiatric disorders;
  • Social level – Interactions with care giver, Knowledge levels of staff, Care organisation and group dynamic;
  • Existential level – Meaning of disorders, Interpretation of life in good and level Patient characterization and interventions should in according to interpretation.

Actors

The different actors involved in the care process are many, and they all represent different phases of collaborative or standalone clinical pathways. Process-oriented approaches and pathways are in many cases hindered by the organsiational agreement between the two main care providers, the county council and the local authorities.

Actors involved
Figure 3: Actors Involved

Care responsibility for chronic diseases is currently distributed and managed by two main bodies, the county council and the Local authorities where the particular patients live. The organization of care work is managed differently in these two bodies. The collaboration between two main mandataries having strong cultural differences effect views and perspectives on the patients is not an uncomplicated situation. It is a relationship that seems to create cumbersome and difficult situations, that makes effective collaboration and information sharing difficult. When a focus is put how use and utilization of ICT is managed in the care process, these problems become visible. The conditions for providing qualitative care vary between the different actors a lot. We will develop these aspects in the coming text further, but first we will provide a presentation of the actors and their role and work in the clinical pathways embedded in the care processes as a whole.

It is misguiding to see the care process as a formalized and smooth flow of activities. Each chronic patient will have his or her own experience and journey through the care process, from the timing of when he or she first enters the process, where and when, and how the patient through diagnosis is involved and further how the patient's condition continuously is supported and developed. We use through our the document the term care process as a conceptual term with an aim to provide an intelligible presentation of the work managed by the different actors, and to shed light on those connections that support the care process independently if they are dependent on ICT or not, but more importantly those that currently is missing and could be improved.

County council

Geriatric centre, NUS - The geriatric centre at NUS focuses on specialized care in dementia and geriatric rehabilitation. Focus is on limited areas of geriatric care such specialist function in dementia diagnostics and management, in diagnosis and rehabilitation in osteoporosis and advanced general geriatric rehabilitation. Furthermore, there also outpatient teams with focus on BPSD management and and teams for management of chronic severely disabled elderly, with for example severe heart failure. The outpatient clinic focus on dementia diagnosis and management. There are 4 different wards, 76 in-hospital beds (dept 1 – General geriatric rehabilitation, dept 2 – Psychogeriatric care, dept 3 – General geriatric and stroke rehabilitation, dept 4 – Ortogeriatric care including post fracture rehabilitation). Geriatric Centrum also provide physicians' medical care in sheltered living in Umeå, but this medical responsibility I provide by GP in other parts of the region.

Medicine-Geriatric care in Lycksele has, within a small country side hospital, beside general internal medical care also a small hospital based care unit for geriatric care. Medicine-Geriatric care in Lycksele has, within a country side hospital out and in patients care including av hospital ward with focus on BPSD treatment.

Care services provided by local authorities (municipalities).

Home care and Home healthcare- home care services in Västerbotten support people to remain in ordinary home settings. As a patient you can have services from the local authorities or from private vendors. These services include a combination of professional health care services and life assistance services. A social care assessor, based on an individual assessment of each client/patient/customer, can on behalf on Social Service Board decide the social service level need for life assistance services. Life assistance services include help with daily tasks such as meal preparation, medication reminders, laundry, light housekeeping, errands, shopping, transportation, and companionship.

Medical home health services are concerned, the contact and decision of made by the GP. This could include medical or psychological assessment, wound care, medication teaching, pain management, disease education and management, physical therapy, speech therapy, or occupational therapy. While looking at the development of patients with dementia, the time staying at home is relatively short. It is safer to live in a nursing home or residential home close to professional home health services.

In Umeå alone, have about twenty nursing and residential homes with xxx beds. Nursing homes- is residence provided by the local authorities for those citizens who require close observation or constant nursing care having significant deficiencies with activities of daily living. Residents could include the elderly, singles or couples, but also younger adults with physical or mental disabilities. Residential homes- in Assisted living residences or assisted living facilities provide supervision or assistance with activities of daily living for those that no loner can live at home. Residential homes in the region offers an apartment, the their living is assisted and they are offered effective coordination of services by outside health care providers; and monitoring of resident activities to help to ensure their health, safety, and well-being. Assistance may include the administration or supervision of medication, or personal care services provided by a trained staff person.

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Project Data

  • Project Name:
    Regional ICT based Clusters for Healthcare Applications and R&D Integration
  • Start/End Date:
    Sep. 2010 - Aug. 2013
  • Project Coordinator:
    Regione Toscana (Italy)
  • Scientific Coordinator:
    Signo Motus s.r.l. (Italy)
  • Consortium:
    15 partners
    (IT, SE, UK, PL)
  • Call:
    FP7 Capacities –
    Region of Knowledge –
    FP7-REGIONS-2010-1
  • Project costs:
    € 3.381.262

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