Caring for a person with Alzheimer’s or dementia often involves a team of people. Whether you give daily care, take part in decision-making, or just have compassion for someone with the illness. As Alzheimer’s disease worsens, the caregiver’s responsibilities change.
When a family member or loved one suffers from Alzheimer’s disease or another dementia, you may be left with more questions than answers. These disorders alter a person’s thinking and behavior and can be extremely difficult, particularly for those who provide care. It is very crucial to learn more about these conditions, what to expect, and what you can do can improve a caregiver’s health and well-being — as well as the well-being of the person for whom you are caring.
The federal government’s materials on Alzheimer’s disease and associated dementia can connect you to vital care and support information. The information on these websites has been evaluated by professionals in their respective disciplines. Health care providers, case managers, social workers, and nonprofit organizations can all be of assistance.
Fortunately, there are numerous wonderful resources for dementia caregivers, many of which are entirely free. Here are some of the best free resources for caretakers who provide dementia care.
Dementia Support Groups
Dementia Support groups are among the most valuable resources for dementia carers. Connecting with other caretakers who are going through similar journeys and experiences can make caregivers feel less alone. Furthermore, other caregivers are frequently wonderful providers of information for specific caregiving situations.
Caregiver Action Network’s Family Caregiver Toolbox
The Caregiver Action Network’s Family Caregiver Toolbox is an excellent resource for information on all aspects of caregiving. While it is not primarily designed for dementia caregivers, it has a wealth of information and tools for anyone caring for a loved one with Alzheimer’s disease. CAN’s Care network is an online support network featuring numerous forums, including one for Alzheimer’s caregivers, one for caregivers dealing with depression, one for caregivers discussing ideas and methods for dealing with healthcare providers, and others.
Keep in mind that the availability of these resources may vary depending on where you reside. More information and referrals to appropriate resources can be obtained through local healthcare professionals, memory care centers, and social services agencies.
Are there any Organizations that Provide Support for Caregivers of Individuals with Dementia?
Yes! Several organizations, including the Alzheimer’s Association, the ARDSI (Alzheimer’s and Related Disorders Society of India) and Dementia Day Care and Respite care, help caregivers of people with dementia. These organizations provide caregivers with information, education, support groups, and resources.
The Alzheimer’s Association’s 24/7 Helpline
Dementia caregivers in crisis can call the Alzheimer’s Association Helpline 24 hours a day, seven days a week to speak with master’s-level doctors and specialists. This helpline provides crisis counseling, decision-making assistance, education, information on local programs and services, financial and legal resources, treatment alternatives, and care decisions. There is also a live chat option available Monday through Friday from 7:00 a.m. to 7:00 p.m.
ARDSI (Alzheimer’s and Related Disorders Society of India)
ARDSI (Alzheimer’s and Related Disorders Society of India) is India’s national dementia organization and the Indian member organization of Alzheimer’s Disease International (ADI). They have released papers such as the Dementia India Report 2010 (in September 2010) and the Dementia India Strategy 2018 (in September 2018). ARDSI maintains chapters in many cities that offer dementia-related services. Memory clinics, carer support groups, home visits for evaluation, carer training for both home caregivers and professional caregivers, daycare centers, counseling, and helplines are examples of such services.
Dignity Foundation
Dignity Foundation works in the broader field of elder care and has a presence in several cities for senior care and community. They have a senior citizen helpline at 1800-267-8780 and a variety of services for the elderly. Dignity also provides dementia day care centers in different locations, as well as an assisted care facility in Neral for those with dementia and other senior adults with disabilities.
Helpage India
Helpage India helps with the elderly. Its mission is to combat isolation, poverty, and neglect, and it supports numerous programs for the elderly, such as its Geriatric Physiotherapy clinics, which are available in some cities. Their work may also include dementia-related projects. The Helpage India website has information on their projects as well as potentially useful downloads such as old-age home directories. The website includes contact information for the organization’s national office as well as its various branches. Helpage’s toll-free helpline number is 1800-180-1253, and you can contact them in your city using the information on their website.
Dementia Daycare, Respite Care and Long-Term Care
In comparison to the number of people with dementia in India, India has extremely few daycare centers and full-time care facilities suitable for dementia, and these few are practically all in metros. However, this figure is gradually rising. Some places are specifically created to assist people with dementia (either just for people with dementia or for elderly people with special needs, including those with dementia). Some establishments accept people with dementia even if it is not specified in their brochures or websites. Some establishments have grown to incorporate dementia because the elders they were previously serving have developed dementia, or to accommodate frequent requests.
Dementia Helplines
Tele-MANAS: Toll-free, 24/7 hotline number 14416 or 1-800-91-4416, is also usable for dementia, is operated by the Union Ministry of Health & Family Welfare and is available in several languages. Many dementia organizations (including ARDSI chapters) provide contact information for helplines. Some such helplines provide dementia information and answer questions about dementia and care, while the majority focus on dementia services and facilities provided by the organization running the hotline or are used to schedule an appointment for a more extensive consultation.
Elder Helplines
On October 1, 2021, the Central Government (Ministry of Social Justice and Empowerment) launched a National Helpline for Senior Citizens, which is linked to appropriate departments in several states (see this explanation Opens in new window). Many states have it operating, and others are anticipated to do so soon. This Seniors Helpline is toll-free and open 7 days a week from 8 a.m. to 8 p.m. on 14567.
Palliative Care Resources
Palliative care is particularly relevant for dementia care, especially when patients reach the end-of-life stage, and carers may need to examine choices and make decisions, as well as receive support from palliative care professionals. Some organizations provide palliative care services as well as internet resources and directories. Other organizations, such as hospitals and other service providers, also incorporate palliative care concepts into their work.
Silver Innings Foundation
Silver Inning Foundation is a registered NGO Dedicated Organization working with Senior Citizens and their Family Members since 2008 to develop an Elder and Dementia Friendly World where Ageing becomes a Positive and Rewarding Experience. The Silver Innings Foundation is a non-profit organization in India that focuses on eldercare and dementia care. Through helplines, support groups, and community outreach programs, they offer carers assistance, guidance, training, and advocacy.
Nightingales Medical Trust
Since 1998, the Nightingales Medical Trust (NMT) has been a professionally managed not-for-profit organization dedicated to the well-being of the elderly and people living with dementia and Alzheimer’s. It maintains the Nightingales Dementia Care Centre in Bengaluru, which serves dementia patients with daycare and respite care. They also provide carer support groups, counseling, and educational programs on dementia care.
Dementia Caregivers Support Network (DCSN)
DCSN is an Indian support network for caregivers of people with dementia. They hope to build a network of carers, share experiences, offer emotional support, and spread dementia-related information.
It’s worth noting that some organizations may have regional chapters or branches, so search for the one closest to you for more localized assistance. Furthermore, local hospitals, clinics, and social service offices may have resources and help for dementia caregivers.