Living with dementia and making decisions

People with dementia can still make decisions in their everyday lives and with support from partners can continue to do so as their condition advances. This is one of the preliminary findings of a two-year research project funded by the Economic and Social Research Council (ESRC) into how married couples living with dementia make decisions on a daily basis.

The study is investigating how couples make decisions over issues such as what to eat or wear, as well as how they make more complex decisions on who manages the finances, and whether or not to attend a day centre. The aim of the study is to identify the practical support that can help couples make these decisions.

Dr Geraldine Boyle and Dr Katherine Ludwin from Bradford University along with Dr Lorna Warren from the University of Sheffield research relates to people with early stage to those with more advanced dementia. They have been spending time at home with the , interviewing each partner and observing them as they go about their daily routines.

Dr Boyle comments: "It's important for people with dementia to be supported to allow them to make decisions where they're still able to. Having dementia doesn't mean you automatically lose your decision-making ability - this needs to be considered on a decision-by-decision basis. Professionals need to facilitate the involvement of people with dementia in decision-making as much as possible."

Key preliminary findings include:

Patterns of decision-making are influenced by 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.

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 dementia still like to be involved in decision-making, but may look to their spouses for help with this process.

The spouses of people with dementia 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 centre can cause anxiety and these have to be negotiated and sensitively handled.

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.

Dr Boyle concludes: "Because dementia is still quite a stigmatised illness, those living with the condition are sensitive to other people's reactions to them. Their confidence can be quite fragile. It is important that they feel good about themselves and know that their views still matter."

add to favorites email to friend print save as pdf

Related Stories

Study questions accuracy of mortality statistics

Dec 10, 2008

Deaths due to dementia and Alzheimer's disease are underreported on death certificates, according to a study conducted by Hebrew SeniorLife's Institute for Aging Research (IFAR), raising concerns about the accuracy of mortality ...

Recommended for you

Dengue fever strikes models in Japan

36 minutes ago

A worsening outbreak of dengue fever in Japan has claimed its first celebrities—two young models sent on assignment to the Tokyo park believed to be its source.

Japanese researchers develop 30-minute Ebola test

38 minutes ago

Japanese researchers said Tuesday they had developed a new method to detect the presence of the Ebola virus in 30 minutes, with technology that could allow doctors to quickly diagnose infection.

Senegal monitors contacts of 1st Ebola patient

13 hours ago

Senegalese authorities on Monday were monitoring everyone who was in contact with a student infected with Ebola who crossed into the country, and who has lost three family members to the disease.

Cerebral palsy may be hereditary

18 hours ago

Cerebral palsy is a neurological developmental disorder which follows an injury to the immature brain before, during or after birth. The resulting condition affects the child's ability to move and in some ...

19 new dengue cases in Japan, linked to Tokyo park

Sep 01, 2014

Japan is urging local authorities to be on the lookout for further outbreaks of dengue fever, after confirming another 19 cases that were contracted at a popular local park in downtown Tokyo.

User comments