Living with dementia

People with dementia can still make decisions in their everyday lives. Support from partners can help them continue to do even as their condition advances.

A 2-year research project, funded by the Economic and Social Research Council (ESRC) investigated how married couples living with dementia get along  in their daily lives.  The study focused on how couples make decisions over simple issues such as what to eat or wear, as well as more complex decisions on who manages the finances, and whether or not to attend a day center. The aim of the study is to identify the practical support that can help couples make these decisions.

Among the key preliminary findings of the research,  the scientists figured out the importance of the couple’s relationship before dementia. The partner who always took the lead will often continue to do this however in most cases the partner without dementia will eventually take over this role. People with dementia still like to be involved in decision-making, but may look for help with this process to their spouses who might try to support them to make decisions. For example, the partner with dementia may still pay at the till if the couple do the shopping together.

Spouses may make decisions at times when their partners can still make these decisions. This can be down to factors such as time pressures and a desire to reduce the burden on their partners.

However, complex decisions such as whether to attend a day care center can cause anxiety and these have to be negotiated and sensitively handled.

Gender has a crucial impact on decision-making. Men with dementia are more likely to continue to take the lead if they have always done so.

People with more advanced dementia can still communicate their likes or dislikes, through facial expressions and behaviour for example.

The study has also found that people with dementia may need encouragement to make decisions as well as the opportunity to make these decisions for themselves.


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