Social Exclusion is a Major Barrier for People with Dementia

21 September 2012

World Alzheimer’s Report 2012 Reveals Stigma and Social Exclusion Are Major Barriers for People with Dementia and Their Carers

The latest World Alzheimer Report released today for World Alzheimer’s Day by Alzheimer’s Disease International (ADI) reveals that nearly one in four people with dementia (24%) hide or conceal their diagnosis citing stigma as the main reason. Furthermore, 40% of people with dementia report not being included in everyday life. What is startling is that nearly two out of three people with dementia and their carers believe there is a lack of understanding of dementia in their countries.

The new report also reveals that:
• Both people with dementia and carers admitted they had stopped themselves forming close relationships as it was too difficult.
• Education, information and awareness were identified as priorities to help reduce the stigma of dementia.

Alzheimers New Zealand executive director, Catherine Hall, says the report indicates that stigma remains a major barrier to people affected by dementia getting the help they need.

“Our biggest fear is that people are struggling with this disease without the care and support they deserve,” says Hall.

The findings from this report also back up Alzheimers New Zealand’s belief that stigma plays a significant role in why people are not seeking a diagnosis for their dementia. A campaign, led by Alzheimers New Zealand, has been launched this month to encourage people to be more open about dementia and overcome any anxiety that could lead to this delay in seeking medical help. The campaign message is ‘the sooner we know, the sooner we can help’ because a timely diagnosis will often mean a person can keep living independently for much longer. Visit: www.wecanhelp.org.nz for more information.

One of the key recommendations to come out of the new report was for Governments to implement national dementia plans and increase research into how to address the issue of stigma.

Alzheimers New Zealand urges the New Zealand Government to adopt its National Dementia Strategy, launched in May 2010. The strategy identifies key areas needing investment including early diagnosis and management of the disease, appropriate quality services, better supports for carers who provide in-home care, and development of a skilled work-force.

Alzheimers New Zealand executive director, Catherine Hall says, “dementia needs to be recognised as a national health priority in order to adequately fund the sector and to best prepare for the significant impact of dementia in the future. As the population ages, numbers will increase and the costs will grow. If New Zealand is not prepared, and does not overcome the issues of stigma, we will not be able to respond to this rapidly escalating challenge.”

Alzheimers New Zealand is currently running a petition to get the New Zealand government to formally adopt dementia as a national health priority in New Zealand. To sign the petition, visit: http://www.change.org/petitions/make-dementia-a-health-priority.

One of the recommendations from the report to tackle stigma surrounding dementia was to give people with dementia a voice. Last year Alzheimers New Zealand launched a website to tell personal stories and poems written by members of the public who have been affected by the disease. To visit the website or to submit a story, go to: www.facesofdementia.alzheimers.org.nz .

About the report:
The report is based on a global survey of 2500 people (those with dementia and family carers) across more than 50 countries (including New Zealand). Just over 50% of the respondents with dementia had Alzheimer’s disease and just under a half of the total number were under the age of 65. The main aims of the survey were to record individual experiences of stigma by people with dementia and family carers and help identify whether national dementia plans have had an impact on reducing stigma.

Report fact sheet
In most countries, dementia has negative associations for those diagnosed as well as their carers:
• 75% of people with dementia and 64% of carers identified negative associations about people with dementia in their country
• 40% of people with dementia indicated they had been avoided or treated differently because of their diagnosis
• One in four people with dementia (24%) admitted to concealing or hiding their diagnosis, citing stigma as the main reason
• Special issues were indicated for those who are diagnosed under the age of 65
• Carers also confront social stigma with one in four (24%) reporting that they face negative associations and a similar number (28%) that they have been treated differently or avoided
• Education, information and awareness were identified as priorities in helping to reduce stigma

People with dementia are also excluded from everyday life:
• 40% of people with dementia reported not being included in everyday life. Nearly 60% of the above indicated that friends are the most likely people to avoid or lose contact after diagnosis followed by family members.
• One in four people with dementia also indicated they had stopped themselves from forming close relationships after their diagnosis, some as it was too difficult and others because they do not want to be a burden.
• Nearly two out of three people with dementia and carers feel there is a lack of understanding of dementia in their country.

Report recommendations to tackle stigma surrounding dementia
1. Educate the public
2. Reduce isolation of people with dementia
3. Give people with dementia a voice
4. Recognise the rights of people with dementia and their carers
5. Involve people with dementia in their local communities
6. Support and educate informal and paid carers
7. Improve the quality of care at home and in care homes
8. Improve dementia training of primary healthcare physicians
9. Call on governments to create national Alzheimer’s disease plans
10. Increase research into how to address stigma

The full report can be found at http://www.alz.co.uk/intranet/files/kces/World-Report-2012-EMBARGOED.pdf

The Executive Summary can be found at http://www.alz.co.uk/intranet/files/kces/World-Report-2012-summary-EMBARGOED.pdf

About Alzheimer’s Disease International
ADI is the international federation of 78 Alzheimer associations around the world, in official relations with the World Health Organization. ADI's vision is an improved quality of life for people with dementia and their families throughout the world. ADI believes that the key to winning the fight against dementia lies in a unique combination of global solutions and local knowledge. As such, it works locally, by empowering Alzheimer associations to promote and offer care and support for people with dementia and their carers, while working globally to focus attention on dementia and campaign for policy change from governments.

The distribution of the World Alzheimer Report 2012 has been made possible by Nutricia Advanced Medical Nutrition, a specialised healthcare division of the food company Danone.

About Alzheimers New Zealand
Alzheimers New Zealand Incorporated is a not-for-profit organisation with 21 Alzheimers member organisations located throughout the country that provide support, information, education programmes and services appropriate to their local community.

These services may include:
• Support for spouses, partners, families and friends coping with the demands of caring
• Information and education to assist with understanding diagnosis and assessment
• Information to help cope with the financial challenges of providing support
• Befriending services and day programmes for people with dementia

About dementia and Alzheimer’s disease
Dementia occurs as a result of physical changes in the brain which affect memory, thinking, behaviour and emotion. In New Zealand, it is estimated that over 48,000 people have dementia. Alzheimer’s disease is the most common form of dementia (50-70%).

Age is the most accepted risk factor for dementia, so as the population ages the number of people with dementia is forecasted to grow rapidly.

By 2026, 74,821 people will have dementia. By 2050, 147,359 New Zealanders will have dementia.

These numbers are growing dramatically due to an aging population combined with the fact people are living longer. Diagnosis is also being made at an increasingly younger age, sometimes in people as young as 50. There is no cure.

ENDS

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