When someone you love has dementia, your life changes too. You may be managing medicines, night waking, hospital visits and relatives' opinions, all while watching a parent or spouse slowly change. The World Health Organization (WHO) notes that caring for a person with dementia can affect the carer's own health and well-being. Looking after yourself is not selfish. It is part of looking after them.
Signs of carer burnout
Carer burnout builds slowly. You might notice:
- Feeling tired all the time, even after sleep, or sleeping badly because you listen for them at night.
- Snapping at the person you care for, then feeling terrible about it.
- No time for friends, work, exercise or your own doctor's appointments.
- Feeling resentful of siblings or relatives who do not help.
- Sadness, tearfulness or a sense that nothing will ever get better.
- Grieving for the person they used to be, while they are still here.
- Thinking "I cannot do this anymore".
If several of these sound familiar, it is a good time to get support for yourself.
The guilt many carers feel
In many Indian families, caring for an ageing parent is seen as a duty, and stepping back can feel like failing. Carers often feel guilty about hiring a home attendant, using a day care centre, considering a care home, or simply losing patience. Others worry about what relatives will say. Guilt is normal, but it is not a reliable guide to what is right. A counsellor can help you separate guilt from facts, so you can make decisions that are safe for your loved one and possible for you.
How counselling helps dementia carers
- A space that is just for you. Somewhere to say the things you cannot say at home.
- Handling difficult moments. Practical ways to respond to repeated questions, suspicion, refusing a bath, wandering or evening restlessness, calmly and without arguing.
- Problem-solving and planning. Sharing care among siblings, planning respite, managing money and paperwork, and thinking ahead about future care.
- Grief before loss. Making room for the sadness of losing someone bit by bit.
- Family sessions. Some providers offer sessions where up to three adults join the same call, which can help brothers and sisters agree on who does what.
If you are struggling with your own low mood, anxiety or sleep, a psychiatrist can help, and can also talk with you about behaviour changes in your loved one alongside their own doctor. Medicines are always decided by the treating doctor.
Looking after yourself, day to day
Small, regular breaks protect your health far better than a rare holiday. Many carers find these steps realistic:
- Ask for specific help. "Can you sit with Papa every Sunday afternoon?" works better than "let me know if you can help".
- Protect your sleep. If nights are broken, share night duty with a relative or a trained attendant at least a few nights a week.
- Keep your own appointments. Your blood pressure, sugar and back matter too.
- Take a short daily break, even 15 minutes for a walk, prayer, music or a phone call with a friend.
- Write down good moments. A smile, a song they remembered. On hard days it helps to look back at these.
If the person with dementia is your husband or wife, you may also be grieving the partnership you had, while living with them every day. That kind of loneliness is real, and it is worth talking about.
Where to get a memory check in India
If dementia has not been diagnosed yet, this is the usual route:
- Start with the family doctor or a physician. Memory problems are not always dementia. The NHS (UK) lists depression, anxiety, infections, an underactive thyroid and side effects of some medicines as other causes, so blood tests and a medicine review come first.
- See a neurologist or a psychiatrist. Many medical college hospitals and larger private hospitals run memory clinics, often led by a neurologist or a psychiatrist who works with older adults.
- Expect some tests in person. Detailed memory testing and brain scans need a clinic visit. An online consultation is useful for the first conversation, reviewing reports, follow-ups and guidance for the family.
Before the appointment, write down the changes you have seen, with examples and roughly when they started, and make a list of all medicines. Our checklist, Is it depression or dementia?, can help. For broader help with an older parent's mood, see counselling for elderly parents.
Support groups and free help
- ARDSI. The Alzheimer's and Related Disorders Society of India has chapters in several cities, and some run meetings for carers. Contact your nearest chapter to ask what is available.
- WHO iSupport. The WHO offers iSupport, a skills and training programme for dementia carers.
- Tele-MANAS: 14416 or 1-800-891-4416. Free mental health support for you, 24×7, in many languages.
- Elderline: 14567. The national helpline for senior citizens, 8am to 8pm every day, for information on services, guidance and help in cases of neglect or abuse.
Choosing a provider and your first session
Look for a counsellor or psychologist who speaks your language and has worked with carers or older adults. Fees are shown on each provider's card, and many offer a free first session. In the first session you will talk about the person you care for, what a normal day looks like, what is hardest right now and what support you already have. Together you will pick one or two things to work on first.
Some carers come for a few sessions at a crisis point, such as just after the diagnosis. Others prefer a regular check-in, weekly or monthly, over a longer time. Both are fine. Our article on supporting someone without carrying everything alone has more ideas, and the self-compassion break is a short exercise for hard days.
When to get urgent help
Call 112 if the person you care for is missing, has had a fall with a head injury, becomes suddenly much more confused, or shows signs of a stroke. If you ever feel you might harm yourself or the person you care for, call Tele-MANAS on 14416 or 112 now. Saying this out loud is safe. Counsellors hear it from exhausted carers, and they will help, not judge.
