Dementia Is Not Just About Memory: How Families Can Help

Dementia affects more than the person who develops it. As memory loss progresses, families may have to deal with suspicion, repeated accusations, anger, withdrawal and changes in personality. For caregivers, understanding why these behaviours occur can be as important as managing the memory problems themselves.

Dr Nahid Suraiya Islam of the Department of Neuropsychiatry at GNRC says families should understand that many difficult behaviours associated with dementia are symptoms of the condition and should not automatically be treated as deliberate acts of hostility.

At the same time, she stresses the importance of keeping older people physically, mentally and socially active.

Staying Active Matters

Dr Islam says a healthy lifestyle, adequate sleep, physical activity and mental stimulation are important, particularly as people grow older.

“A stressful lifestyle is harmful in many conditions, including heart disease, diabetes, hypertension and dementia,” she says.

She also stresses that ageing should not automatically mean becoming physically inactive.

“Many people think that older people should not exercise, but maintaining muscle strength and cardiovascular fitness is important even in old age,” she says.

She points to a common problem after retirement: people becoming increasingly inactive and socially isolated.

“Once people retire, they sometimes become completely inactive. They sit at home, eat and sleep and gradually become socially isolated,” she says.

For older people, staying active does not necessarily mean following a demanding exercise programme. The emphasis, she says, should be on an activity level that is comfortable and enjoyable.

“If a mother has spent her life doing household work, for example, she should continue to remain active in ways that are comfortable and enjoyable for her,” Dr Islam says.

Mental activity also matters. Puzzles, Sudoku, social interaction and other forms of mental engagement can help keep people active.

The same principle applies to social life. Retirement should not mean withdrawing completely from friends, relatives and the wider community.

When Families Do Too Much

Families often try to protect elderly parents by doing everything for them. But Dr Islam says complete inactivity is not necessarily helpful.

A person who has been independent throughout life may suddenly find that family members no longer let them do even simple tasks.

Keeping an elderly person involved in familiar activities, as long as those activities are safe and manageable, can help preserve a sense of engagement and routine.

The goal is not to force an older person to remain busy. It is to avoid unnecessary isolation and inactivity.

When Suspicion Becomes Part Of Dementia

One of the more difficult aspects of dementia for families is behavioural change.

Dr Islam describes what is known as behavioural and psychological symptoms of dementia, or BPSD. These may include suspiciousness, agitation, anger, anxiety, depression and difficulty expressing emotions.

“A very common complaint is, ‘Someone stole my things,’” she says.

The accusation may be directed at a domestic worker, daughter-in-law, son-in-law, visitor or another person in the household.

The person may become convinced that an object was stolen even when it was simply misplaced.

Along with suspiciousness, Dr Islam says, a person may become angry, agitated or distrustful.

“Along with suspiciousness, they may become angry, agitated or distrustful,” she says.

For relatives, such accusations can be deeply upsetting. But responding with anger can make the situation worse.

Understanding The Behaviour

Dr Islam says families need to recognise that these behaviours may be part of the illness.

“People need to understand that dementia is a medical condition and that treatment and management are possible,” she says.

When relatives interpret dementia-related behaviour as deliberate misbehaviour, conflict can quickly develop inside the home.

Dr Islam says she has seen situations where families become angry with elderly people, mistreat them or even lock them inside rooms because they do not understand that the behaviour is linked to a disease.

She says the response should be understanding and appropriate treatment, not punishment.

If psychological and behavioural symptoms are not addressed, managing everyday care can become increasingly difficult. A person may become more agitated, refuse assistance or struggle to look after themselves.

The family therefore has an important role in recognising changes and seeking professional help.

Caregivers Need Care Too

The emotional and physical demands of caring for a person with dementia can be considerable, particularly when the condition becomes severe.

Dr Islam describes this as “caregiver burden” and says caregivers themselves may need support and guidance.

“Taking care is very important, and especially for dementia caretakers, there is a chapter called ‘Caretaker Burden’,” she says.

Families may need help learning how to handle difficult behaviours, but they also need to pay attention to their own mental health.

“You also need to take care of the caretaker,” Dr Islam says.

She adds: “If the caretaker is relaxed and healthy, they can take good care of the patient.”

That is an important distinction. Caring for someone with dementia is not simply about doing more for them. It is about creating an environment where the person stays as engaged and independent as possible while receiving appropriate medical and emotional support.

Families may not be able to stop every behavioural change associated with dementia. But understanding what is happening can prevent many unnecessary conflicts.

For a condition that can gradually change a person’s memory, behaviour and ability to communicate, patience within the family can become part of the care itself.

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