About Dementia

Living with Dementia

Please click here to access Living with Dementia Research Programme Website

The Living with Dementia project was established in Autumn 2007. It is a programme of psycho-research designed to examine policy and practice related issues in dementia care. The programme is part of the School of Social Work and Social Policy and the Dementia Services Information and Development Centre (DSIDC) at St James Hospital.

Inherent in the philosophy underpinning the programme is the belief that psycho-social interventions in dementia care, make a real difference and can improve quality of life in people diagnosed with dementia and reduce caregiver burden. The programme also seeks to impact on policy development and contribute to the design of best practice models for all those affected by dementia.

A key rationale for generating this programme of research is the creation of evidence of best practice or evidence on which to base practice. This is critical in the Irish context where at present there is a veritable vacuum of knowledge, a lack of understanding of the needs of people with dementia and their family caregivers and staff employed in care settings sometimes with limited formal training.

The programme is based on the premise that people with dementia have a right to good quality services and should have a choice of care packages designed to meet their individual cognitive, spiritual, social, and emotional needs.

The key activities of the programme include the recruitment and supervision of young academics to develop research competencies in areas previously under-investigated in the Irish context, the development of collaborative arrangements between care environments such as nursing homes, day care centres and hospitals and research and training centres, and the training of PhD students in the area of dementia care.

Expected milestones include (i) the development of practice guidelines to help to upskill health service professionals and enable them better cope with the dilemmas confronted in dementia care, (ii) the development of a sound social science research infrastructure in dementia care and (iii) the communication of high quality research findings to practitioners and policy makers thereby contributing to models of best practice.

Director

Dr Suzanne Cahill is currently the Director of the Living with Dementia programme. Prior to taking up this appointment, she had been national Director of the Dementia Services Information and Development Centre at St James Hospital for some 8 years.

Dr Cahill has been actively involved in the area of lobbying for the rights of persons with dementia for many years both in Australia and in Ireland. In Australia she was employed at the University of Queensland where as an Academic she lectured in the area, wrote her PhD on the topic of Social Policy and Family Caregiving and was an energetic advocate serving on many different Alzheimer's Association boards.

Since returning to Ireland she has published nationally and internationally in the area and has also produced some useful dementia care training videos.

PhD Student

Andrea Bobersky has recently been awarded the first of these PhD studentships. Andrea is a trained Psychologist who has worked overseas in the area of dementia care and has lectured in Social Gerontology.

Her research thesis will examine the topic of the effects on residents with dementia of relocation from a traditional care ward to a specially designed dementia care unit

PHD Studentships

Two fully funded PhD studentships in dementia care are currently available and an additional two scholarships will be available through the School of Social Work and Social Policy and the DSIDC in 2009. These studentships will provide opportunities for graduates to acquire a range of skills and training relevant to their research, policy and practice careers. The Living with Dementia programme and PhD studentships will focus on three broad research areas namely;

training and its impact on health service professionals and on care practices
the effectiveness of non-pharmacological interventions on quality of life, mood and behaviour
the social, emotional, spiritual and financial cost of family caregiving

Research Study on the Prevalence of Dementia in Long Stay Care

This study on dementia and cognitve impairment prevalence rates in nursing homes in the Dublin area is now completed and the work is currently in Press and due for publication in the journal Age and Ageing. It found that in a random sample of 100 residents surveyed across four nursing homes, 89% had a cognitive impairment, of whom 42% had a severe, 27% moderate and 20% mild impairment.

Only one third of these residents had a prior clinical diagnosis of dementia, nor was dementia a major reason for nursing home admission-accounting for only 14% of admissions. The research also found that nursing home staff in general tended to under-estimate the level of cognitive impairment detected in residents but in cases where a clinical diagnosis was available, assessments were considerably more accurate.

Findings from this study would suggest that there is much under-detected dementia/cognitve impairment in Dublin based nursing homes. The results from this study have now been fed back to the nursing homes who participated in the project and recommendations about best practice have been made. We would like to thank Directors of Nursing and other nursing home staff for their assistance with this work.

In another related study looking at quality of life for a large sample of older people living in nursing homes, a striking theme emerging from in-depth interviews with participants was the importance of family and staff relationships, privacy and intimacy.

Loss, including loss of independence, absence of friendship, loss of home and deaths were identified as sources of sadness to nursing home residents and as factors that adversely impacted on quality of life. Those with a severe cognitive impairment were more likely to feel acutely dislocated in long term care and feelings of abandonment and loneliness emerged in their narratives. These views were reinforced by findings from the proxy informant interviews for the same group.

The study's findings would suggest that policy makers, service planners and nursing home care staff pay particular attention to the unmet needs of the very vulnerable group of people with a severe cognitive impairment. We also recommend that in research studies on quality of life, proxy informants should be used to complement the voices of those with a severe dementia.

Results from this work are currently being used to develop a useful pamphlet for nursing home staff and family caregivers about policies and practices which best promote quality of life.

Memory Clinics in the Republic of Ireland

This report details the findings of a recently completed study highlighting the locations and service provisions of services around the Republic of Ireland that are concerned with people with memory problems. This is in light of the realisation that Ireland is lacking in an up-to-date Memory Clinic directory.

The report outlines any services that were located in Ireland during the course of data collection for the study. It serves to inform people who may be concerned about their memory of the locations of Memory Clinics nearest to them and the facilities they offer.

The report summarises each clinic in terms of where it operates from, the contact number and the services provided. Also included are the funding profiles, diagnostc information, and waiting times.

It found that there are eight Memory Clinics in Ireland, four of which are based in Dublin. Seventy five percent of the clinics offer drug treatment but only three have a full time neuropsychologist as part of their team. All clinics offer at least one follow-up appointment and extensive information is given to people who are worried about their memory.

This includes information on diagnosis, symptoms of memory problems, driving, support agencies such as the Alzheimer Society and general advice for dealing with a possible memory problem.

Alzheimer’s Disease

Symptoms and treatment

Alzheimer’ s Disease (AD) is by far the most common type of dementia and is called after a German Psychiatrist, Alois Alzheimer, who in 1907 first described the changes caused by the condition.AD starts very gradually, sometimes insidiously, and progresses slowly but steadily.

The disability experienced can vary from one person to another and from day to day. Common difficulties experienced include, memory loss, impaired judgement, personality changes, difficulties with speech and conversation, difficulty with decision-making, wandering, repetitive questions, sleep disturbance and sometimes depression, suspiciousness, aggressive behaviour and incontinence.

This list is by no means exhaustive. The onset of AD generally occurs in later life (60 +) and its incidence increases with age. In some cases the disability associated with AD may be improved by drug treatments.

Such treatments work by boosting levels of a chemical called acetycholine, which is deficient in people with AD. It needs to be remembered that only about 50% of men and women with AD who are offered medication, respond positively. Not everyone with AD is suitable for such treatments.

Causes of AD

Unfortunately the cause of Alzheimer’s Disease is largely unknown. Increasing age and family history are known to be risk factors. The impact of genetics on AD is quite complex. A small number of families have a very strong genetic component to their AD.

There are a few kindreds with autosomal dominant transmission, which means that the person with a parent with AD has a 50% chance of getting it. However, these pedigrees are extremely rare and are characterised by early onset, usually before the age of 50.

A recent discovery has been that specific versions of the gene for a protein called Apolipoprotein E (alleles for ALP) that an individual carries, are related to the risk of developing sporadic (non-familial) AD. The gene for Apolipoprortien E is located on chromosone 19. However, not everyone with ApoE 4 will get a dementia so testing for Apo E 4 genotype is not predictive of AD.

Other non-genetic suggested risk factors for AD include head injury (with loss of consciousness), gender (women are more commonly affected than men), and lower level of education. In the dementia research literature, the association between educational level and AD is somewhat contested.

It has been noted that the lower risk of AD for people from a higher educational background may be an artefact, since there is a likelihood that those with more education have a higher baseline level of functioning and therefore do not meet criteria for AD as readily as others.

Older people with Down’s Syndrome are at risk of developing AD due to their having a triple copy of chromosome 21, the chromosome on which the amyloid precursor protein (APP) is found. In fact it is well established that all persons with Downs Syndrome aged over 40 will have the neuropathology for AD.

The importance of early diagnosis

The diagnosis of AD is primarily made on the basis of symptoms. Diagnosis usually means that the person meets the criteria for a diagnosis of probable AD and this diagnosis is usually only 80 to 90% accurate. More definitive diagnosis requires the examination of the brain tissue either by brain biopsy or after death to demonstrate the characteristic features under microscope. Brain biopsy is rarely recommended in view of the risks and discomforts associated with the procedure.

Unfortunately at the moment, there are no blood tests or brain scan that can definitely diagnose the condition. However it is most important to exclude other forms of dementia that may be treatable and even reversible. For this reason seeking an early diagnosis is very important and can help to empower the individual to take control of his or her legal and financial affairs and become actively involved in care plans.

An early diagnosis may also help to relieve much anxiety experienced by family members who may attribute the person’s memory problems or changed behaviour to other non-medical causes. In the past, many physicians shielded their patients from "bad news" such as the diagnosis of cancer, to reduce anxiety and medical decisions tended to be made by doctors sometimes in consultation with family members.

Now the accepted practice is to disclose all information to patients (provided they wish to know and are capable of understanding ) and to share all medical decision making with patients and their families.

Neuropathology of AD

The diagnostic characteristics features of AD are plaques and tangles found on post mortem in the brain. Plaques consist of a core of protein called amyloid. Amyloid is a medical term used to describe the protein deposited in the brain tissue and in blood vessels of people with AD. The specific amyloid protein in AD is called "beta amyloid" which is derived from a larger protein called Amyloid precursor protein (APP).

APP is normally produced by a number of different types of cells in the body. Its exact function remains unknown. By metabolic pathways which remain poorly understood, APP can in some people be broken down into Beta Amyloid which in turn deposits itself in the brain.

Beta amyloid is insoluble, resistant to degradation and does not form naturally. Dying brain cells can be found surrounding amyloid deposits in parts of the brain, which are important to memory and other cognitive functioning. Some believe that these amyloid deposits are the key factors leading to the development of AD.

Another characteristic of AD found under microscope are tangles. The term tangle describes the appearance of dense proteins found within neuronal cells. These tangles can appear as bundles of threadlike structures. One particular protein component of tangles is called Tau. Tau protein found within tangles in AD differs from Tau protein found in normal brains and has been chemically modified.

There is now an on-going debate among scientists over, which is more important in relation to the aetiology of AD, plaques or tangles. Some researchers argue that tangles correlate more clearly with the clinical features of AD while others maintain that an increased production of amyloid protein, represents a critical early step, and that tangles mark the death of neurones from exposure to amyloid protein or other toxic compounds.

Dementia: A person-centred approach

While undoubtedly, understanding the neuropathology of the brain and the genetic and metobolic pathways leading to the development of AD is very important, for a long time researchers (and it could be argued the public at large) have concentrated almost exclusively on visualising AD, in terms of atrophied brains, riddled with plaques and tangles.

This over-medicalisation of AD has it is argued, served to further dehumanise and disadvantage the individual experiencing the symptoms of dementia by squeezing him or her out (Stokes, 2000).

An energetic dementia movement led primarily by British and American clinical psychologists and sociologists, has over the last decade, helped to shed light on the important contribution non-medical factors play in relation to the subjective experience of dementia. Recent research now suggests that social, psychological and environmental factors play a key role in the way in which AD is diagnosed, experienced, and managed (Chester & Bendon, 1998; Phair & Good, 1998).

Person-centred care or care that places the individual with dementia at the centre stage and sees that person in the context of his or her past and present social world of roles, relationships, likes, dislikes and hobbies has been shown to improve quality of life. It has been demonstrated that people with dementia have an acute sensitivity to their local environment and may feel anxious, frightened and at times vulnerable.

A poorly adapted environment, may aggravate confusion and may contribute to excess disability. Examples of poorly adapted environments include day centres or nursing homes where there is excessive noise, poorly controlled temperature levels, harsh or limited natural light and inadequate sign-posting and cueing. The positive manipulation of the environment is one way in which cognitive deficits associated with AD can be reduced.

DSIDC subscribes to a holistic model of dementia that draws on research and clinical contributions made by both medicine, psychiatry and the social and behavioural sciences to better understand AD.

Underpinning all of its professional activities is an emphasis on promoting a positive approach to the care of people with AD. Each of the Centre’s professional activities has developed from a practical knowledge-based perspective and the fundamental belief is that people with AD have a right to be treated with dignity and respect and that many of the so called problems associated with AD can be minimised or resolved through creative management.

About Dementia

Living with Dementia

Alzheimer’s Disease

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