DESK REVIEWS | 07.02.02. Non-governmental organisations (NGOs)

DESK REVIEW | 07.02.02. Non-governmental organisations (NGOs)

Yes. There is one federation (FEBRAZ) composed of four associations.

Yes. The Alzheimer’s and Related Disorders Society of India (ARDSI) was founded in 1992. It is a registered non-profit volunteer organisation dedicated to dementia care, support, awareness and anti-stigma campaigns, training, and research. Through various platforms, ARDSI has engaged in developing dementia care homes, day care centres and memory clinics as well as conducting training programmes for family caregivers, medical health workers, and social workers. The national organisation has 22 chapters in various cities across the country. ARDSI is the first Afro-Asian organisation to receive full membership to Alzheimer’s Disease International (ADI), UK. ARDSI has been registered under the Travancore Cochin Literary, Scientific and Charitable Societies Registration act XII, 1955 (Reg. No. S.N. ER 243/93) in 1993.

The Nightingales Medical Trust (NMT) is another non-profit organization that was established in 1998, it is based in Bangalore and is working to support persons with dementia and senior citizens through several programmes and services.

There is a national NGO dementia association, Alzheimer’s Indonesia, which is also a member of ADI. It was first founded as Asosiasi Alzheimer Indonesia in 2000, and in 2013 it evolved into the Alzheimer’s Indonesia Foundation. It has been recognised as an ADI member since 2009 (Alzheimer’s Indonesia, 2019b).

References:

Alzheimer’s Indonesia. (2019b). Tentang Alzheimer Indonesia.

The Alzheimer’s and Dementia Organization of Kenya (ADOK) was founded in 2016 by a group of family caregivers. ADOK works to raise awareness of Alzheimer’s and provide support to those affected with Alzheimer’s and other forms of Dementia (Alzheimer’s & Dementia Organization Kenya (ADOK), 2019).

References:

Alzheimer’s & Dementia Organization Kenya (ADOK). (2019). Training. https://alzkenya.org/wp-content/uploads/2019/08/ADOK_Newsletter.pdf

 

There are several NGOs in Mexico. The main organisation is the National Alzheimer Federation, FEDMA (Federación Mexicana de Alzheimer). FEDMA groups 20 associations from different states of the country.

FEBRAZ has a national office.

The ARDSI head office is based in Delhi and the sub-national office is located in the state of Kerala.

Alzheimer’s Indonesia national office is located in Jakarta. It currently has regional chapters in 18 cities/towns in Indonesia and 3 in other countries (Groningen, Netherlands; San Francisco, USA; Geneva, Switzerland) to serve the Indonesian diaspora there (Alzheimer’s Indonesia, 2019b).

References:

Alzheimer’s Indonesia. (2019b). Tentang Alzheimer Indonesia.

Alzheimer’s and Dementia Organization of Kenya has its main office situated in the capital of Kenya, (Nairobi): Soin Arcade 3rd Floor in Westlands, but has no other sub-national offices (Alzheimer’s & Dementia Organization Kenya (ADOK), 2019).

References:

Alzheimer’s & Dementia Organization Kenya (ADOK). (2019). Training. https://alzkenya.org/wp-content/uploads/2019/08/ADOK_Newsletter.pdf

FEDMA has a national office and works with its state-level affiliated associations.

They are only volunteers.

While ARDSI does have paid staff, most of the work carried out by the organisation is by volunteers.

The majority of staff are volunteers.

The majority are volunteers who receive no payment. As with care homes, most of the services they offer are provided by volunteers (self-contact) or student volunteers who carry out these activities as part of their professional practices (for example, psychology, social work, nursing).

Awareness campaigns, home care services, training and support for carers, training for healthcare professionals and community health agents, activities for people living with dementia.

All ARDSI chapters run in their own capacity following basic guidelines from the head office. The organisation carries out dementia awareness and anti-stigma campaigns throughout the year. Particularly during World Alzheimer’s month in September, the different chapters conduct several public events. The ARDSI also provides a few dementia-related services to support caregivers and persons with dementia. Some of the chapters run day-care/activity centres for people with dementia as a social service for minimal charges (charges are only to cover operational costs). The organisation also conducts dementia research and holds an annual conference.

Table 7.3 List of activity centres/day cares/ institutions run by each of the ARDSI chapters.

Serial No. Services provided by ARDSI chapters City
1. ARDSI Cochin Harmony Home, Cochin
2.

 

ARDSI Comprehensive Dementia Day Care Centre, Cochin
3. Dementia Respite Care Centre Thrissur
4. ARDSI Malabar Harmony Home Kozhikode
5. Full Time Dementia Care Centre Thiruvananthapuram
6 Dementia Day Care Centre Kolkata
7 Dementia Day Care Centre New Delhi
8 Dementia Day Care Centre and activity centre Hyderabad
9 Dementia day care centre Guwahati
10 KSID SMRUTHIPADHAM Day Care centre, Kunnamkulam
11 KSID SMRUTHIPADHAM Full time care centre, Ernakulam
12 Dementia Day Care centre, SMRITIVISHWAM Mumbai

 

The association provides:

  • Caregivers meetings (monthly in Jakarta, less often in the regional chapters),
  • Education sessions,
  • Workshops on Dementia Care Skills.

ADOK provides the following services (Alzheimer’s & Dementia Organization Kenya, 2019):

  • Care giver training: with a limited number of trained doctors and effective patient-care options, ADOK provides training on:
    1. Understanding Dementia,
    2. Understanding Alzheimer’s,
    3. Effectively communicating with an Alzheimer’s patient,
    4. Dealing with care giver burn out,
    5. Dealing with behavior change (aggression),
    6. Safety.
  • Support groups: Through monthly support group meetings, caregivers of persons with dementia meet and talk about their experiences in providing care to persons with dementia while giving each other support.
  • Research and advocacy: ADOK conducts advocacy in the media, churches, and among community health workers.
References:

Alzheimer’s & Dementia Organization Kenya (ADOK). (2019). Training. https://alzkenya.org/wp-content/uploads/2019/08/ADOK_Newsletter.pdf

Currently FEDMA has a help line providing general information and orientation services. All its state-level affiliates offer diverse services such as day care, carer training and general information on dementia and care recommendations for carers. At national level there are currently 21 associations that are part of FEDMA. Most of them provide support group sessions, general information on dementia and care for people with dementia. Support groups are usually quite diverse depending on who delivers them: geriatricians, nurse, occupational therapist, psychologist, among others.

Generally, the activities of the ARDSI are not funded by the government. However, the National Institute of Social Defence (NISD) under the Ministry of Social Justice and Empowerment, provided funding to the ARDSI to train caregivers of people with dementia; however, some of the courses have been discontinued.

The government does not fund any of ALZI activities. However, according to ALZI internal reports, in some collaboration with government institutions, they provide in-kind support such as venue and meals.

None of the activities are funded by the government. ADOK is a Non-Governmental Organization that depends on donors for funding (Alzheimer’s & Dementia Organization Kenya, 2019).

References:

Alzheimer’s & Dementia Organization Kenya. (2019). Home: Our programs. https://alzkenya.org

 

No. However, FEBRAZ and local associations are now being involved in the dementia policy development as part of STRiDE activities.

ARDSI developed the Dementia India Report in 2010 (ARDSI, 2010), the Dementia India Strategy report in 2018 (ARDSI, 2018), and Dementia in India Report in 2020 (Kumar CST et al, 2019). The 2018 Dementia India Strategy Report was submitted to the Ministry of Health and Family Welfare (MoHFW) (ARDSI, 2018).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

Alzheimer’s and Related Disorders Society of India. (2018). Dementia India Strategy Report.  Alzheimer Disease International. Available from https://ardsi.org/pdf/Dementia%20India%20Strategy%20Report%202018.pdf

Kumar CTS, Shaji KS, Varghese M, Nair MKC (Eds) Dementia in India 2020. Cochin: Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin Chapter, 2019. Available from: https://dementiacarenotes.in/dcnfiles/Dementia-in-India-2020.pdf

The organisation has worked closely with the government on accelerating the launch of the National Dementia Policy in 2016. It has also been involved in the development of a national guideline on dementia diagnosis and management in the primary care which is currently being drafted by the Ministry of Health since 2016.

Through the STRiDE project, ADOK contributed to the National Dementia Plan (currently under development) by the Ministry of Health, Africa Mental Health Research and Training Foundation, and ADOK (London School of Economics (LSE), 2018; C. Musyimi et al., 2019).

References:

London School of Economics (LSE). (2018). Strengthening Responses to Dementia in Developing Countries (STRiDE). https://www.lse.ac.uk/cpec/research/projects/dementia/stride

Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf

Yes. FEDMA was involved in the process of development and publication of the National Alzheimer Plan.

Although there are services available in most regions of Brazil, the availability is higher in the Southern regions and the accessibility is easier in urban areas. One association also offers a distance service: Helpline – with counselling app, which benefits people from several Brazilian zones, including Brazilians abroad. There are no systematic activities in rural areas. There is limited attention in more distant areas, such as in the Amazon region.

Most service providers are from cities or urban areas. The Ellen Thoburn Cowen Memorial (ETCM) Hospital, the Nightingales Dementia Care Centre located in Kolar, are examples of centres in smaller towns and areas on the outskirts of Bangalore. The Nightingales Dementia Care Centre also offers tele-medicine based care. Another rural setup is based in Shantiniketan, near the city of Kolkata, which is run by the ARDSI Kolkata chapter.

Plenty of dementia-related services are provided through Alzheimer’s Indonesia. For instance, caregivers’ meetings, knowledge upskilling on Alzheimer’s for the Purple Troop cadres, early detection and screening of dementia, and awareness-raising campaigns about dementia involving youth (Alzheimer’s Indonesia, n.d.). In general, the activities are categorised into four main groups: caregiver meetings, education and training, seminars, and World’s Alzheimer Month. Alzheimer’s Indonesia has eighteen chapters across major cities in Indonesia (Jakarta, Bali, Bandung, Bekasi, Bengkalis, Bogor, Depok, Jakarta, Kupang, Malang, Manado, Medan, Salatiga, Semarang, Solo, Surabaya, Tangsel, and Yogyakarta).

References:

Alzheimer’s Indonesia. (n.d.). Kegiatan.

The services provided by ADOK are only available in Nairobi, Kenya’s capital. It is therefore only accessible to people living in Nairobi and the neighbouring towns or those who can travel to participate in the support groups. However, there are some caregiver tips that have been provided on the website (Alzheimer’s & Dementia Organization Kenya, 2019).

References:

Alzheimer’s & Dementia Organization Kenya. (2019). Home: Our programs. https://alzkenya.org

 

As previously mentioned, most services are provided locally by NGOs. There is no systematic information gathered to assess variability or detailed characteristics of their services, but, in general, services are available in state capitals and larger cities. Out of the 32 States, 19 currently have a dementia/Alzheimer’s association. They all have support groups, but only 6 have day centres, and there are 9 day centres, of which 4 are located in Mexico City.

No, there is no associated cost.

Full-time dementia day-care and residential care homes do charge for their services including organisations like ARDSI and NMT. Although subsidised rates are offered to lower-socioeconomic groups.

There is no information on payment for accessing services for people with dementia or their carers. However, Alzheimer’s Indonesia sells various merchandise such as books and stationeries to raise funds for the operational costs of the provided services (https://store.alzi.or.id/product). We have learnt informally that ALZI is testing a new program called ‘care navigator’ which provides online support to family carers by connecting them to experts who can help them address problems they are facing at home, such as behavioural and psychological symptoms of dementia (BPSD), combined with education sessions on dementia care skills. One session costs about IDR 500,000 (approximately USD 30, rate as of July 2020), which is put towards the operational costs of the programme.

The services provided by Alzheimer’s and Dementia Organization of Kenya are free.

While some services such as support groups are mostly free of charge or they may ask for small fees or “recovery” costs, all-day care centres charge a fee as well as care homes given that they are private and they make up most of their income to be then used for carers salaries, meals, etc., provided by them.

The NGOs in Brazil should provide services to people of all social classes and educational levels. However, the majority of people who are currently supported by the associations have average educational attainment (>8 years of education), are from middle class, and are predominantly from urban areas. The NGOs provide a lot of information, in different ways, and use a variety of different media which can be useful for people despite their educational and economic status. Because of the diversified dissemination tools, it is difficult to estimate the exact number of individuals served. However, media engagement is usually high, and the on-site raising awareness activities reach approximately twenty thousand people a year.

According to information posted on Alzheimer’s Indonesia’s website and social media, as of 2018 they have held 169 caregiver meetings and 225 events of awareness raising and risk reduction activities. This has reached 2,500 people with dementia and 5,000 carers across Indonesia over the whole year (Alzheimer’s Indonesia, 2019b). Although no specific information could be found about the characteristics of people with dementia and their caregivers who access the organisation’s services, in general, the organisation chapters are based in urban areas (Alzheimer’s Indonesia, 2019b).

References:

Alzheimer’s Indonesia. (2019b). Tentang Alzheimer Indonesia.

Those that receive these services are mostly those with caregivers who are educated and, because of the location of the organisation, are predominantly living in the capital.

No systematic data is gathered, and therefore this is unknown. A first survey of carers was developed in 2018 by the National Association of Dementia Specialists with the aim of generating a profile (quantitative survey) of carers in the country. The survey was sent locally to all associations and to specialists in the private sector so they could distribute and gather the data within their participants/patients. However, no publications of their results are available.