Alzheimer's-the problem of stigma
By Niall Hunter-Editor
Stigma and prejudice against people with Alzheimer's disease are a significant obstacle to the well-being and quality of life of those with dementia and their families, and affect the provision of care to those who need it.
This is one of the findings of a major new Irish study on stigma and dementia published to coincide with World Alzheimer's Day.
The report shows that the stigma of dementia is very real, very cruel and widespread.
Components of stigma such as discrimination, devaluation and stereotyping were clearly apparent in the daily lives of those living with the condition, according to the study.
The report indicates that there is also a lack of knowledge about dementias, the impact that new medications can have in the treatment of the condition and the support available to those with a diagnosis of dementias.
The report examined nine aspects of stigma in dementia and its impact on all those affected–the person with the condition and their family/carers.
Researchers from the School of Nursing and Midwifery at TCD, who carried out the study with the Alzheimer's Society, interviewed people with dementia and their carers, as well as health professionals, to understand the experience of living with dementia and the realities of dementia-related stigma and its components.
According to Mary Mc Carron, principal investigator, issues which affect those with a dementia include social isolation, fragmented, unsuitable and poorly-resourced services, lack of information about the services available and the difficulty in navigating a complex health and social care system in which services are often unresponsive to the real needs of people with dementia and their carers.
"That is what we have to target and change," she said.
A key finding of the study was that the daily concerns and day-to-day toll of care- giving on those looking after someone with dementia is hugely burdensome in its own right, and was compounded by the additional load of social isolation, prejudice, discrimination and poorly-developed and fragmented services.
The report indicates that a key challenge for service providers and policy-makers is to understand to what extent the service difficulties are due to lack of planning in terms of the implications of a growing ageing population or due to either not valuing a particular group (people with dementia and their carers) or valuing the needs of other groups more.
Honest answers to such considerations will help establish the extent to which dementia impairs service provision for this section of the population, according to the report.
According to the Alzheimer Society of Ireland, it is hoped that the report will encourage a re-examination of the value placed on people with dementia and their carers by policy-makers and that it will make them realise that population trends, health and social care costs and disease burden all point to the fact that dementia must become a national health priority.
There are currently 38,000 people with dementia in Ireland. In 2026 there will be 70,115 and in 2036, 103,998, according to the Alzheimer Society.
There are 50,000 carers of people with dementia in Ireland and it is estimated that the lives of 100,000 people are directly affected by dementia. This figure is reckoned to increase three to four-fold when the effect on the wider family is considered.
"We believe that education and awareness programmes, aimed at the general public, GPs and other health providers are absolutely vital in helping to tackle the prejudice and discrimination that those with dementia and their carers encounter on a daily basis," said Maurice O'Connell, Chief Executive of the Alzheimer Society.
The findings of the report were listed under nine themes:
*Stigma and discrimination - is there or isn't there the report indicates there is structural and organisational discrimination which highlighted a failure to prioritise dementia in terms of policy and resource allocation.
*A dark secret still - there are negative public images, stereotypes and terms still associated with dementia, all of which potentially leads to stigmatisation. Fear linked to dementia means there is a reluctance to engage with those who have a dementia and avoidance was highlighted as a common reaction to the presence of dementia. Significantly, this was also an issue for health professionals.
*Behind the closed door – the reality of dementia – the report shows that the emotional impact of stigma on those with dementia is significant. Anger and hurt were emotions commonly felt by those with a dementia due to diminished social networks and negative social encounters. Embarrassment and shame was also felt if others became aware of the dementia or witnessed inappropriate behaviour in public. Carer/family guilt where there was an inability to meet a perceived societal expectation to continue caring on an indefinite basis was also experienced. It was shown that dementia could either unify or divide a family.
*Loss of place – the report proves that there is a huge potential for people with dementia to be treated inhumanely in society. Enforced social isolation was commonly experienced due to withdrawal of friends etc. and barriers to social participation were outlined. Carers described themselves as being at risk of similar experiences to the person with dementia and having to undergo a significant redefinition of life space and role changes.
*Navigating the system–the complexity of interactions and experiences of the health and social care systems potentially contributes to dementia related stigma. The report indicates that those with a dementia and their family/ carers found services to fragmented, inadequate and inflexible and failed to offer choice or meet their needs.
*Making safe – constant vigilance – the report highlights the fact that carers/family members maintain a constant vigilance in terms of protecting the person with dementia. This protective role involves decisions as to when and to whom the diagnosis of dementia is disclosed, ensuring that the person with dementia is not exposed to the gaze of others or environments unsuitable to his/her needs and protecting them against exposure to stigmatising experiences.
*Double whammy –ageism and dementia – the report points out that where people with a dementia are older, ageist societal attitudes compounded the experience of dementia and such people are at risk of being doubly stigmatised.
*Viewing dementia as a disability – the report concluded that conceptualising dementia in terms of disability was advocated as a positive step to advance measures to address dementia related stigma, with the focus on addressing prejudice and discrimination.
*The future –dementia ready –the report recommends numerous interventions targeted at personal, organisational and societal levels with the intention of addressing dementia related stigma and its components.
The Alzheimer Society helpline is 1800 341 341
See also irishhealth.com's Alzheimer Clinic…
I care for my mother who is 85yars and is in the later stages of Alzheimers But I refuse to keep her isolated we go to town visit shops go to the doctor churce and even though in the begining it was hard to hear the comments and see the stares.I belive my Mother is entitled to live as full a life as I can give her and just because she has no awareness of her screaming and her (not political corrent comments) to me that no reason to keep up housebound even though she is in a wheelchair and screames in the carpark while I am getting her out I just hold my head up for my mother as well as myself.To Me any education given to all sectors of the public and medical staff can only be for the benfit of all patients and their familys In small towns the hospitals and day care centers even though they are for the care of Alzhimers patient are not staffed with any nurse trained in mental health.
My father in law aged 82 is in a home and is very well looked after, The staff are brilliant - he can be very angery and abusive and was very hard to handle. We looked after him as best we could before we had to look for a place for him. We visit him every day and there is always somone with him. It was a very hard decision to make but it is better for him all round. They can give him the care he needs.
Eddie I am delighted to hear that your father in law is happy and well cared for. My mother would not cope at all well in care and we found out on Friday that she now has breast cancer which is an added worry as it is so hard to make her understand that taking her medication is so important. Hope your father in law stays well and happy.
Like NIMBY, in response to attempts to provide facilities for certain other disabilities during the past 2 decades,we often shun the carers` plights, as we do to bereaved persons, after the onset and sympathies.The silent ones require strong advocates!
Having had some slight experience of part time caring for two relatives with dementia I have great admiration for any fulltime carers and think they should receive more support both from the community in general and from the health services. Where people can provide care in the home of the person affected by dementia this helps to keep people in a familiar environment but it is exhausting both physically and emotionally giving the level of full time care that is required even in milder cases where there is a fear of someone wandering outside the home or turning on a gas burner without it lighting etc and if family are unable to provide a safe environment and particularly if the person suffering dementia shows aggressive behaviour there should be no stigma attaching to seeking professional nursing home care on a respite or fulltime basis. Friends are often afraid to offer to help carers out in case they are unable to cope with the dementia sufferer if they want to leave the house or get upset while the main carer is away but sometimes even a free half hour can be so helpful just to go the library or have a bath without having to be on duty all the time - If carers ask for specific help and perhaps initially remain in the house but out of the room for 10-15 minutes so that the person helping out knows you are at hand to direct them if a difficult situation arises then you may find people are delighted to help out and you may be gradually able to build up a bit of free time as the person coming in to help out becomes more comfortable and feels more able to cope. Friends are often grateful at being asked for the help they are afraid to offer and being asked to do a specific task for a specific length of time on a regular basis may be rewarding for both carer and helper.
we recently brought our mam to a nursing home for fulltime care, At present she is assessed as needing 24hr supervision rather than 24hr care,she is not settling and is clear at times as to why she should be at home and says she would rather be dead than left in the nursing home,dementia wise she is probably in the middle stage. we dont know whether its too early for her at this stage to be in a nursing home longterm. We would be grateful for any helpful views or families with simuliar exsperiences.Thanks.
It does not matter what symptoms a person with dementia displays, it is ridiculous that there should be any stigma attached. All caregiving is exhausting and should be supported by adequate service provision. To seanny I would say that mother will sttle down in the nursing home, but with Alzheimer's disease it takes longer to settle. I understand that there is often huge guilt attached to having placed a family member in care. I have had to do that with my own mother. The main problem we have with caring for people with dementia is that there is not enough known about the condition in Ireland. There are no professional education courses here for nurses to learn how they should manage the person with dementia, and that is a serious shortfall in our health and social services. It is so hit or miss.
Thanks for your comment ursabear,Our mother is indeed settling in at the nursing home now thanks to the excellent care she is receiving which none of us could or can provide for her.Thanks
Where does the stigma come in? I don't see any stigma around this condition?