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Care to Care

Dr Anil Patil
Caring for the caregivers of people with dementia
By Dr Anil Patil

In my previous articles, I have talked about issues facing all caregivers, regardless of the ill-health or diagnosis of the person they care for. This time, I am focusing on caregivers of loved ones with one particular condition – dementia.

Dementia and related conditions have a drastic impact on a family both directly and indirectly. It is not just the person with dementia who is affected, but the entire household. This is particularly poignant where the responsibility of caring falls to the family, which is very typical in India. This new dynamic can put a huge burden on a household financially, emotionally and physically too.

With reports from international bodies such as the WHO (World Health Organisation) declaring that ‘Dementia is increasing fast in Asia placing a huge burden on a growing army of carers, who are mainly family members’ the scale of the issue is not going to lessen, rather it is going to increase, which is why it is so important to address the issue of caring for the caregivers of people with dementia.

Despite the large number of people affected by dementia in India (currently around 3.7 million and predicted to rise to over 7 million by 2030), the issues surrounding the condition remain a largely hidden problem. There is no financial support for families and very little is offered in terms of emotional support. In many situations, caregivers are left on their own to provide care and are often forced to give up work all together.

The emotional effects of being a caregiver are also significant. Caregivers not only have to cope with the loss of losing a loved one to dementia, but also the burden of providing ‘informal care’, financial and emotional support too. This often leads to increased depression, anxiety and other psychological problems for the caregivers.

With all that said, in Indian culture, many see taking care of the family and elderly as a privilege and a positive role, despite the negative impacts that come with it, and it is for this very reason that we need to support family caregivers and champion their important role.

If you are reading this article because you care for a relative or friend with dementia, I would like to offer a few suggestions to support you in your role. Whilst naturally your main priority as a caregiver may be for your loved one, it is also incredibly important to have awareness for your own health and wellbeing. The emotional and physical effects of being a caregiver for a person with dementia can be very damaging if they are not recognised and addressed early on.

Here, I outline some practical advice and strategies for caregivers to ensure they are caring for themselves, as well as their loved ones.

Look after yourself

As much as you can, eat a healthy, balanced diet, keep active and get enough sleep. Without these your body will soon feel drained, making caregiving even more of a strain.

Address your emotions

As with your physical health, it is also important to take care of your emotional wellbeing. It is normal to feel sad, stressed, angry, frustrated, isolated, anxious and guilty as a caregiver, and some of these emotions can be consuming. Recognising the triggers for these emotions and talking to family, other caregiver or your doctor can help alleviate some of these feelings

Take a break

It is vital to have time to yourself and take a break from caregiving. Looking after a person with dementia can be incredibly tiring, so a few hours to yourself to relax, recuperate and rest will allow you to reenergise.

Coping with financial burden

One of the major concerns for caregivers can be the financial burden of caregiving, and this can lead to significant stress. If you are experiencing money worries with care, don’t be afraid to ask for help from family and friends.

Finally, always remember you are doing the best you can!

This practical advice will hopefully go some way to help caregivers see the importance of caring for themselves and allow them to find techniques of coping with their caregiving role more effectively. 

Dr Anil Patil is the founder and executive director of Carers Worldwide. Carers Worldwide highlights and tackles issues faced by unpaid family caregivers. Established in 2012 and registered in the UK, it works exclusively with caregivers in developing countries. Dr Patil co-authors this column with Ruth Patil, who volunteers with Carers Worldwide.For more information you can log on to Carers Worldwide.You can write to the authors at columns@whiteswanfoundation.org