Caring for an older person with cognitive decline

What caring for someone with dementia involves

Dementia is not a normal part of ageing. It is a group of diseases, the most common being Alzheimer's, that gradually affect memory, thinking, orientation and, over time, behaviour and the ability to carry out everyday tasks (WHO). It progresses slowly, and each stage asks something different of the person caring.

Caring for someone with dementia carries a particular weight. The person is still there, but changing: they forget conversations, repeat questions, become disoriented, sometimes get angry or suspicious for no apparent reason, and there may come a day when they do not recognise you. Many sons and daughters also go through a hard reversal of roles: becoming the carer of the person who cared for them.

So carers often live with anticipatory grief, for the person they were while they are still present, and with guilt that never rests: for losing patience, for needing a break, for considering a care home. That strain has a name, carer burden, and it is not a weakness: the WHO recognises that caring for someone with dementia affects the carer's own health and wellbeing. Looking after yourself is not a luxury: it is part of caring.

How to recognise exhaustion

• It has been months since you had time for yourself without feeling guilty about it.
• You struggle to stay patient when they ask the same question for the tenth time, and feel terrible afterwards.
• You sleep badly because they wake at night, become disoriented or you fear they will leave the house.
• You have stopped seeing friends, doing things you enjoyed or working as you used to.
• You miss the person they were, even with them in front of you, and do not know who to talk to about it.
• There is tension in the family about who cares, how much and which decisions to take.
• You get ill more often and do not see a doctor because there is no time.

What helps

Understanding the disease. Knowing what dementia is, which changes to expect and why they happen helps you not take an outburst or a lapse personally. Clinical guidelines recommend offering carers education about the disease and training in caring strategies (NICE NG97).

Adapting how you communicate. Short sentences one at a time, a calm tone, not arguing or constantly correcting what they remember wrongly, and responding to the emotion behind the question more than to the question itself. Many difficult moments can be defused this way.

Routines and a safe environment. Steady timetables, a tidy space free of hazards, and simple activities the person still enjoys. They give security to the person with dementia and predictability to the carer.

Sharing the load, even when it is hard. A relative who takes a weekend, a day centre, home help or respite stays. Delegating is not abandoning: it makes sustainable what is not sustainable today. Finding out what support you are entitled to is also part of caring (NICE NG97).

Talking to people in the same situation. Alzheimer's family associations and support groups are places where you do not have to explain anything, and hearing that others feel the same guilt takes a lot of the weight off.

What therapy does. At We Are Psycho you have a space that is just yours. We work on guilt, anticipatory grief, anger and burden, how to set limits without stopping caring, how to make hard decisions, such as a care home, with less guilt, and how to organise the support you need, including with the rest of the family.

What it does not do. It does not replace your relative's medical care: diagnosis, treatment and follow-up of dementia sit with their healthcare team. Therapy helps you sustain the caring.

When to ask for help for yourself

Getting tired of caring is normal. It is time to ask for help for yourself when tiredness has turned into hopelessness, when no moment of the week is yours, when you are losing your temper with the person you care for more often than you would like, when your health is suffering or when you have felt for weeks that you cannot go on and have not told anyone.

If you notice changes in memory or behaviour in a relative who has no diagnosis yet, talk to their doctor: a timely assessment makes it possible to plan care and reach support sooner.

If you have thought about hurting yourself or not wanting to go on, do not wait: call 800 911 2000 (Línea de la Vida). In immediate danger, for you or the person you care for, call 911. We Are Psycho does not provide emergency care.

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  Ivonne Nieves Valencia

  Clinical Psychologist | Specialist in Cognitive Behavioral Therapy

  View profile

Frequently asked questions

Is it normal to feel I have already lost them though they are still here?

Yes. It is called anticipatory grief and it is very common in people caring for someone with dementia: you miss the person they were while they are still present. Naming it lets you live through it without feeling it is disloyal.

Is moving them into a care home abandoning them?

No. When care needs outgrow what can be sustained at home, a care home can be the way to keep caring: in a different role, more about company than tasks. It is a hard decision, and therapy can help you make it with more clarity and less guilt.

How can I go to therapy if I do not even have time to sleep?

Sessions are online and fit whatever gap you have, however small. Many carers find that their therapy hour is the first they win back for themselves.

How does therapy work at We Are Psycho?

It is online and confidential. You tell us what is going on, we suggest the psychologist who fits you best and you choose. If you have questions about how it works first, we explain it in a free 20-minute call, with no commitment.