Alzheimers Disease

Ellie Barton, Jessica Riley, Lisa Reilly and Zo Wheeler

Alzheimers disease is an incurable neurological disease in which changes in the nerve cells of the brain result in brain degeneration and eventually brain death (Morrisey 1999)

Facts and figures Psychosocial aspects and issues concerning early diagnosis Relevance and recognition of these issues

Facts & Figures

700,000 people in UK have A.D. or dementia 2/3 are women Can affect anyone: Culture, ethnic background Costs NHS over 17 billion a year By 2025 over 1 million people will have a dementia type disease (Dementia UK 2007)

We WILL at some point be caring for someone with Alzheimers Disease.

 Physiologically:
Interrupts information transfer Cells die and brain shrinks causing build up of debris in brain

Psychologically/ Cognitively:
Worsening of memory and motor skills ADLs such as dressing appropriatly, making dinner become problematic Disorientation to time and place Language skills both understanding and expressing deteriorate Three phases: mild > moderate > Severe (Bennet & Jones 2001)

Much More than memory loss, it effects all the parts of the brain that makes us individual and allows us to relate and respond appropriatly to other people (Bennet & Jones 2001)

Diagnosis
Modern tests are generally accurate at diagnosing AD but a definitive diagnosis can still only be made after death by examining the brain during post mortem. (Alzheimers research trust) Early diagnosis can be extremely beneficial to the person with Alzheimers Disease For many people in the early stages, participating in the decisions gives them a sense of control.
(McGahan 1994 cited in Goldsmith 1996)

Why is it not Diagnosed Early?

Stigmatization Lack of Correct knowledge about Alzheimer s Disease Healthcare professional s own shortcomings

Health Models
Theory of reasoned action (Ajzen & Fischbein 1980) - going to the Dr would be seen as the wrong thing to do- there s nothing wrong with me belief about others opinion - other people in my society wouldn t go if they were in my situation - Motivation to
comply with others opinion

Relevance to us as Nurses
As nurses it is crucial that we recognise these problems Educate patients and recognise signs and symptoms even if they do not We as healthcare professionals don t succumb to biases and judgements about people with Alzheimer s disease

Media & Society's Effects On Alzheimer's.

What To Expect.
Types of media The views carried by them How it effects people with Alzheimer's How we can help to control this Video Clip.

Types of Media
Media has expanded enormously through the past few years. Its all around us from newspapers to televisions to posters to radios even dogs are being used today as walking advertisements.

What s Been Noticed.

Our concept of death, inherited from history and film is...sudden death is generally more sexy than chronic death It is not yet commonly accepted that the person with dementia has a viewpoint and even if they did communicate a viewpoint its not a guarantee that this should be listened to or acted upon

 Simply consider the column inches in newspapers. They are mainly devoted to younger acute deaths. Princess Diana s car crash for example compared to the chronic death of a person with Alzheimer s Disease.

Stigma
There are two types 1. Felt stigma their particular illness embarrasses them or makes them feel ashamed. 2. Enacted stigma as a consequence of the persons illness others discriminate against or reject them.

Common Enacted Stigmas.

Emotionless Crazy Useless Must be extremely old Cursed or evil An embarrassment Harmful A nuisance Unpleasant Anti-social Not a person but an object to be studied

A Study By McGregor and Bell (1994)

Findings people with dementia face continual failure, since they are regarded as a nuisance, unpleasant and antisocial. No one wants them around. This destroys their self-confidence and their self image it creates withdrawal, insecurity and depression

Who Can Blame The readers?

The media forces a sense of troublesome, hopelessness and ending by their headlines alone. Education Lowers Alzheimer s Risk, But Not Rate of Mental Decline Alzheimer's could cost country more than recession Sedatives 'killing 23,000 Alzheimer's victims a year Alzheimer's drugs double death risk in elderly

Disempowerment
The use of this language in the media can socially and psychologically disempower someone, especially the more vulnerable. To deprive the power of or to influence another. This is easily reflected as one of the most common side effects of Alzheimer s Disease is depression.

 Medical surroundings can carry an even larger institutionalised feeling They often concentrate on what the person is not able to do one of the most frequent ways to disempowering people is to treat them as an object (Cotrell and Schulz, 1993)

What Happens
A patients first encounter with a member of the medical team hears there is nothing we can do Psychologically and socially this is NOT true! The effects are secondary . People with AD often think the embarrassment amongst friends and the isolation this brings, the notion that one might as well give up

What Can We Do?

Try and reverse this process Create a benign social psychology Result from previous study said our residents need to believe that they are valuable, loved and appreciated.

Towards Empowerment
1. total listening and making a huge attempts to interpret what people are saying/needing 2. Involve people in all discussions on them, even facial expressions and body language gives them empowerment 3. Empowerment involves offering and respecting choices. 4. Understanding the conflict between desire to keep the clients safe whilst respecting their wishes

The First Alzheimer s Awareness Advertisement.

http://www.youtube.com/watch?v=iyuQydStb V8

Family and the Caregiver

 Loss, grief and bereavement Stress depression and anxiety Effects on the family and or caregiver Effects of quality of care on the person with A.D Care and support for the caregiver

Loss, Grief and Bereavement

Loss in regards to a loss of future plans Families despair at the loss of cognitive and non-cognitive functions Loss, relief, guilt and depression, when the individual with A.D is admitted into a nursing home

Theories of Loss and Bereavement

Theories tend to simplify or generalise feelings loss and bereavement Personal experiences can vary depending on the type of relationship shared Theories of bereavement and loss not directly applicable to A.D as the individual is still alive. Living bereavement

Parkes (1996) & (1991) theory of bereavement

Parkes (1996) & Parkes et al. (1999) cited in Niven (2000) identifies 4 stages of grief. 1. Numbness and denial 2. Yearning and pinning 3. Despair and depression 4. Recovery or reorganisation

Stress, Anxiety, and Depression

5.7 million informal carers in UK This would cost 34 billion a year to fund using statutory services (Office Population Censuses and Surveys 1997, cited in Adams et al. 2000) Little if no support available for carers

Depression
Depression is very common, and carers often report anxiety symptoms and high levels of stress, which are often directly associated with the demands of caring for someone with dementia. Adams et al. (2003) pp.188 Depression leading to social isolation and lack of interest in social activities

Effects on the Family/Caregiver

Unexpected and unplanned Feelings of resentment, abandonment, and forgotten about Effects family relationships Financial strain Full-time work impossible to sustain Conflict within families may reflect previous conflict which is exacerbated by the demands of care. (Morrissey et al. 1999 pp47) Can have positive effects on relationships as well

Study by Vellone et al. (2007)

Interviewed a selection of caregiver s for people with A.D asking them about their quality of life (Q.O.L) What worsened Q.O.L? Worries about the future progression of the illness Lack of knowledge about what would happen in the later stages of A.D Stress of care giving

Time
Caregivers have no time to spend of themselves e.g. social activities No time to look after physical health like going to the GP Feelings of guilt when the engage in activities they used to do as a couple Worry when they leave the individual that they may harm themselves

Care and support for the carer

Why is it important to care for the carers? Increasing aging population Informal carers give a large amount of care to people with A.D Effective support systems for carers to cope with the demands of caring so that patients can stay at home longer The burden for informal caregivers and their change in their Q.O.L can lead to patients being placed in nursing homes. (Vellone et al. 2007)

Donaldson et al. (1998) cited in Adams, (2003) suggests 3 broad intervention approaches: 1. Altering the symptoms of the illness 2. Reducing the caregiver s exposure to these symptoms 3. Changing the caregiver s responses to the illness

Levin (1991) cited in Morrissey et al. (1999) Early identification of dementia Comprehensive medical and social assessment of identified cases 3. Regular referrals between agencies 4. Continuing reviews of each patients needs and backup for carers 5. Active medical treatment for any other illnesses 6. The provision of information, advice and counselling for carers 7. Regular help with household and personal tasks 8. Regular breaks for carers 9. Appropriate financial support 10. Permanent residential care when necessary

1. 2.

Summary
Ellie Definition of A.D Psychosocial aspects as to why A.D is not diagnosed early Why it is important for healthcare professionals to recognise the symptoms of A.D early Jess The reactions and feelings around A.D for the individual Learned helplessness Coping mechanisms of A.D

Lisa The different types of media Views and stereotypes carried by the media and society How these stereotypes can effect people with A.D Zoe Loss, grief and bereavement felt by family/carer Stress, depression, and anxiety felt by family/carer How to support the family/carer