Family support

Helping young children to maintain relationships with their grandparents with dementia was the focus of Society-funded research which has led to a new information booklet for families.

By Caroline Bradley

Researchers from the Oxford Institute of Ageing have produced a leaflet full of ideas on how to maintain relationships across the generations when a grandparent has dementia.

Based on an in-depth study of six families, the booklet concentrates on the needs of children below the age of 12. Developed and written with the families, it contains explanations of changes in behaviour caused by dementia, and practical ideas on how to encourage ongoing interactions between children and their grandparents.

Parent power

Professor Sarah Harper carried out the research with her colleague Jenny La Fontaine. She said,

'We found that parents are generally the gatekeepers for whether or not there is a successful relationship between children and their grandparents. We want to educate parents about the benefits for the whole family of involving your children in supporting someone with dementia.'

Although dementia affects everyone in a family, most research focuses on the person with dementia or their main carer. In the Oxford study, parents, grandparents and children from six families were all interviewed, as were some of the professionals involved in supporting them.

Based on the interviews, the researchers found the following:

Strong identity

Relationships with grandchildren can provide a sense of achievement for people with dementia, particularly when dementia is causing significant challenges and changes in their lives. Most of the grandparents with dementia who took part in the research had a strong sense of their identity as a grandparent, with their role remaining important to them.

Even when dementia had affected verbal skills, grandparents were still able to express their identity through interactions at an emotional level, such as showing happiness to see their grandchildren and at being able to share activities.

The child's view

Children often didn't have rigid expectations about how their grandparent should behave. As one parent explains in the booklet, 'There's no sense from Peter that Grandpa should be a certain way or should be better at something than him, and sometimes it allows my Dad to be good at something.'

If the person with dementia is experiencing gradual changes, younger children can experience them at a different pace to adults. They may initially be less aware of the changes and not comment on them, focusing instead on relating to the grandparent 'in the moment'.

Need to talk

The researchers found that children find it difficult to talk about their grandparent because they feel disloyal, and if they don't have the opportunity to talk, they can blame themselves. They concluded that the best advice for families is to create opportunities to talk, to be open about what is happening, and tailor information to the child's level of understanding.

Helping children to understand what is happening is particularly important when the family at large is finding it difficult to adjust to the new situation, and when their grandparent's dementia progresses and the changes become more obvious. 

They recommend responding to any questions children might ask, and for adults in the family to agree on a consistent explanation or set of messages.

Maintaining the relationship

To ensure that children continue to spend time and engage with their grandparents, researchers recommend that adults provide practical support to help them. One of the suggestions is to discuss in advance what they might talk about during the visit, such as a recent experience or telling a specific story.

Grandparents might also need suggestions or encouragement about what activities they can participate in with their grandchild. Unfortunately, when a grandparent's dementia affects frontal lobe functioning or leads to a sudden and dramatic change in abilities, there is the potential for the changed relationship to result in a negative experience for the child.

Involvement

Professor Harper is convinced that for many children, particularly those who are a bit older, being responsible in some minor way for the care and support of a grandparent with dementia can bring a tremendous sense of worth and responsibility.

The booklet

The families involved in the research project were keen to create a practical guide to help other families support relationships between children and their grandparents. They worked with the researchers to develop the content for the booklet, entitled Managing Together, Keeping Connected.

The Society provided a dissemination grant of £18,000 to help researchers publicise the results of their research. More booklets are currently being printed, and information will follow  when they are available.

In the meantime, you can view the booklet as a pdf