Dr Gayle Madden, Admiral Nurse Professional and Practice Development Facilitator, talks about how couples living with dementia can work together to manage their household, to ensure the person with dementia maintains their sense of identity.
Dementia impacts the balance in a couple’s relationship especially when managing household duties, like food shopping, cooking, cleaning and finances. In a couple, each person takes on different responsibilities, and although these may evolve or change over time, each person has a set of responsibilities that gives them a sense of purpose and value.
When someone has dementia and needs to be cared for it is critical that they retain their sense of purpose and value in the home – for the good of the partnership and the couple’s quality of life. Research has shown that frustration, anger or aggression can be mistaken as a symptom of a person’s dementia, when they are actually expressing their upset with the changes that are occurring within their home life. This can especially happen to women with dementia who tend to have an emotional attachment to caring and managing the household.
Here are some tips for professional and family carers to help the person with dementia feel involved in the running of the household, with their other half, so they maintain a sense of purpose and value:
- Being cared for is not about managing a set of tasks but managing a relationship. It’s about doing things together in a way that may not have been done before to achieve ‘togetherness’. This will help the person being cared for to feel safe, assured, and valued; and this will protect their self-esteem.
- Avoid ‘take-over-ness’ where the carer assumes they are doing the right thing by taking over all household tasks when the person with dementia finds this upsetting. This leads to anxiety, distress, loneliness, a loss of responsibility and it puts a strain on the relationship.
- In the early stages of dementia be aware that the person may feel guilty that they need to be cared for and this may lead to them letting the carer make the decisions related to activities in the home, even if they are unhappy with the action.
- Create ‘togetherness’ by asking, listening to, and understanding what is important to the person with dementia. What is their personal journey and how have they lived their life? What have they previously taken responsibility for and how do they want to still be involved? It may be rather than cooking the meal, like they used to, they would like to assist and advise, to feel they still have ownership of the task.
- Everyone is an individual and people change. Don’t assume that because one person with dementia wants to stay involved in the cooking or food shopping that all people with dementia do. Likewise, if the person used to like cooking the meals, don’t assume that they will still want to do this. Some people feel that they have done ‘their time’ and are quite happy to handover the task to someone else, whereas others will want to stay involved but in a different way.
It’s important that people who have dementia retain their sense of identity and a perception of independence, for their own well-being and their carers. By understanding the values of the person with dementia a couple can adapt their lives to ensure togetherness, so their relationship isn’t at risk of being controlled by the dementia diagnosis.
Dr Gayle Madden’s advice is based on the findings from her Professional Doctorate research paper, which studied the experiences of women, who have Alzheimer’s disease, becoming cared for and receiving assistance with daily living activities. If you are a professional carer or academic who would like to know more about her research project please contact Gayle by email.