Fulfilled living in later life

Q My father rejects his diagnosis of dementia and refuses our help. Why is this?

Many people living with dementia accept the diagnosis in the beginning, but because of the dementia refuse help anyway. One of the most difficult things in caring for a person with dementia can be his or her determination to continue to live independently, even though they can’t cope with their daily acts of living. Cognitive decline often means they are not aware that they are neglecting to do things or are doing them wrongly. There are so many stories of people living with dementia (PWD) setting off fire alarms and putting themselves in danger by leaving something too long on the stove or in the microwave, running a bath till it overflows into the floor below, going to the shops and getting lost, and more.

Keeping their person safe can be a huge strain for caregivers. In Dementia: Frank and Linda’s Story, I describe how Frank trapped himself under a big glass fronted bookcase by pulling it over thinking it was the door to the bathroom.

Linda said that anticipating Frank’s actions was on the same stress level as an Italian traffic conductor at a busy intersection in rush hour when the traffic lights have failed.

Accepting help is a logical thing to do, but dementia steals logic. Instead, the PWD can feel that the helper is taking control and it makes them feel vulnerable and resentful, although much depends on the personalities involved and their relationship. Our individual reactions and perceptions are formed by a lifetime of experiences and vary widely. The husband in a couple I know looks for help and accepts it willingly. He has also accepted the diagnosis.

A diagnosis of dementia is not the start of the journey but defines the cause of the symptoms the person has been experiencing for some time. Sometimes the person isn’t able to absorb the information, while for others it’s a relief to know there’s a physical reason for the symptoms. Many experts believe that giving an early diagnosis to patients is like putting a label on them that creates negative expectations.

The important thing for everyone caring for a loved one with dementia is understanding how to care for them sympathetically and effectively. I’d recommend reading our dementia information pack, Putting the Pieces Together. It contains sections on every aspect of dementia care, including vital spiritual support.

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