Caring for a Parent With Dementia

Your parent is forgetting more, getting confused or behaving in ways that are not like them. Some days you are their child, some days a stranger, and some days you are the only one holding everything together. Many carers feel grief, frustration and guilt all at once. This is common, and there is help.

What is happening

Dementia is a group of conditions that damage the brain over time, affecting memory, thinking, behaviour and eventually daily functioning. Alzheimer's disease is the most common type. It is not a normal part of ageing, and it is not caused by witchcraft or by anything the family did. In some communities, confused behaviour in older people is misunderstood, and older women in particular have been wrongly accused and harmed. A proper medical assessment protects your parent.

Some causes of memory problems, like infections, thyroid problems, vitamin shortages, depression or medicine side effects, can be treated, so a doctor's check is always the first step. If it is dementia, medicine may help some symptoms for a time, and good routines, a calm environment and safety measures help a lot.

There is also a legal side that families often miss. An ordinary power of attorney stops working once your parent can no longer make decisions. After that, the family may need a court or the Master to appoint someone to manage their money and property, which takes time and money. If your parent is still able to decide, now is the time to make a will, discuss wishes about care and the end of life, and get advice from an attorney. Our Legal hub explains these steps.

Signs to notice

• Your parent repeats questions, gets lost, or forgets familiar people
• They leave the stove on, wander at night, or are being taken advantage of with money
• Mood changes, suspicion or anger that is new for them
• You are losing sleep because of night-time waking or wandering
• You feel grief for the parent they used to be
• Siblings disagree about care, money or a care home

30-second self-check

Answer yes or no. Go with your first honest answer.

• Have you noticed your parent's safety at risk at home, for example wandering or leaving the stove on?
• Has your parent been assessed by a doctor for the memory changes?
• Are you losing sleep most nights because of their care?
• Is there no legal plan yet for their money and decisions?
• Do you feel angry or close to breaking point with them sometimes?
• Has your own health, job or relationship suffered because of caring?
• Is there no one who gives you a regular break?

0-1 yes: You are coping for now. Use this time to plan ahead for the next stage.
2-3 yes: The strain is building. Get medical, legal and practical support in place this month.
4 or more yes: You are close to your limit. Please arrange respite and talk to a counsellor or social worker soon.

What you can do next

• Today: Remove or secure obvious dangers at home: the stove, medicines, keys, and gates if wandering is a risk.
• This week: Book a doctor's assessment if your parent has not had one, and take a written list of changes you have noticed.
• This month: See an attorney about a will and decision-making while your parent can still take part. Hold a family meeting on care and costs.
• Keep a simple daily routine, and use short, calm sentences. Arguing about facts rarely helps.
• Find respite: another relative, a day-care programme or a short stay in a care facility, even for a weekend a month.

Your tool

Caregiver Load Check - a private check based on a well-known caregiver burden scale that shows how heavy the caring load is for you, with next steps.

When to get professional help

Get help urgently if your parent is unsafe, is being abused or exploited, or if you feel you might lose control with them. Get support too if you are exhausted, low or isolated. Feeling at your limit does not make you a bad child; it means you need more help.
Who can help: doctor, nurse, social worker, occupational therapist, home care service, estates attorney, counsellor, psychologist

Getting help in South Africa

Your clinic or GP can refer your parent to a geriatric or memory service at a public or private hospital. Social workers at the Department of Social Development and in hospitals can help with care options and suspected abuse of older persons. Alzheimer's and dementia support organisations in South Africa run carer groups in several cities. The Cleared Mind 24-hour Careline on 0800 212 146 can connect you to a counsellor. Legal Aid SA (legal-aid.co.za) can help families who qualify with capacity and estate questions.