Every year there is new research about the effect of dementia on family carers, including the cost of caring and damage to the health of the carer. However, one aspect of dementia that is rarely discussed is the effect on family relationships.
This is not about the changing relationship between the person with dementia and their family, though that is an interesting dynamic. The subject that is almost taboo is the relationship challenges between other family members.
Families are complex and varied. The first big variation is in how closely they now live in proximity to each other and/or the person with dementia. How you relate to your aging parent if you live in another continent is different than if you are in the same street. But it is also dependent on other fixed cultural elements such as your own age and gender. The expectations in society of what a daughter or other female relative should provide in terms of support is changing but still quite different from her male counterpart. This is reflected in the statistics on who provides care now. Although there are many wonderful male family carers, the stats show that it more frequently falls to a woman to do this work.
It is easy to see that if there is a family where female relatives live with or near the person with dementia, tacit assumptions might be made about what it is appropriate for them to provide. The internalisation of those norms of behaviour, combined with the unnoticed way caring roles evolve, means that the delegation of the family responsibility to “the daughter who lives nearest” might happen without discussion. There are still tasks that are generally regarded as “something a son should never have to do for his mother” which would be seen as acceptable for a daughter to do for her mother, or her father. The key question for every family is, “How and when was it decided who should do what? And who decided?” This can be a source of conflict.
In my role as an adviser to people affected by dementia, I no longer expect most calls to be about the clinical aspects of the condition, or about the path through the maze of health and social care. Rather I find I’m more often acting as a mediator in situations where the family members disagree about what to do next, and who is to do it. The underlying conflicts are based on two main elements. First is the differing level of understanding about what dementia is and how it progresses. The second is a divergent level of understanding about how the health and social care system works. This sounds quite straightforward and as if an information giving session would settle any tensions that have arisen. Here’s a book. Come back if you have questions. Unfortunately, it’s not so simple.
To reduce family conflict about decision making, planning helps. You don’t know what’s going to happen, it might not be that bad, and planning won’t fast-track the onset of disaster, so just do it. This is what powers of attorney and advance directives are for. Whatever decision is made for a person with dementia, it should be with their involvement as much as possible and if they can’t take part, it should be in line with what they previously indicated they would have wanted (if possible), and in their best interest. So just granting the power isn’t enough. There needs to be conversation in advance on hypothetical situations. What if in years to come you are living alone at home and you fall and break a bone? What if you are confused and putting yourself in danger? If you’ve had those discussions, there’s less need for family to fall out later for example about whether it’s time for a move to a care setting.
Even if there are attorneys there can be a problem. Because you can have more than one person in the role, they might have different views, particularly about timing. One says it’s time to stop driving, the other says it’s not. One thinks a move to care is needed, the other isn’t so sure. If these attorneys are sisters, they could have a falling out that outlasts the cared for person. In Powers of Attorney, the One Stop Guide, the author Sandra McDonald is in a great position to advise on this, and her advice is to have an uneven number of attorneys. Someone then can have a casting vote. Sandra trained as a nurse and a lawyer and has experience as a carer. She also used to be a Public Guardian, so presided over the administrative aspects of this kind of decision-making at a national level. She says that stopping driving is one of the biggest sources of disagreement within families. Another family member might not like the decision, but it being made by an attorney is the nearest thing to the person with dementia making the decision themselves.
When adult children start having to make joint decisions about their ailing parent, they may be making some of the most emotionally difficult and expensive decisions in their lives. They might be deciding at a time when there is a lot going on. One or both parents might be sick. One may just have died, triggering the need for discussion about the welfare of the other. It’s not unusual then to find that they are talking at cross purposes. One might hold the role of executor as well as attorney and get confused about which decisions they are empowered to make while the person is still alive. They may have signed up to these roles without properly reading the documentation or having any instruction about these complex duties. A great way to solve a family argument about decision-making is to read the signed document and check the list of decisions for which you have been granted power. It might be quite dissimilar for different documents, and those arguing may have wrong ideas based on other documents they’ve heard about. People get confused over the concepts of whether the document has been “registered” or “activated” and by whom. Clarity about this is a good way to take the heat out of argument.
I am often asked if the family disagreements are caused by unresolved sibling rivalry, or unspoken fears that someone will misappropriate the inheritance. Is there a question of male siblings disregarding their little sisters, or do the girls form a clique against the others? Is any combative behaviour a result of dread and anxiety, or anticipatory grief about the loss of a parent? When someone has dementia, it’s too late for the psychoanalysis. At this stage, the thing is to be practical and to keep calm with these five basic rules
- Prepare. Discuss as much as you can with the person in advance and put in place the legal and financial mechanisms that will make the job of caring easier. If you’ve left it too late, get family members together and see where you can catch up.
- Know the score. Read and share as much as you can about dementia and how it unfolds to minimise surprises, so you are all on the same page. Try scenario planning. Get briefed on how social work operates.
- Respect the attorney. They’ve been given a job and they are doing their best. (But be aware of elder abuse, including financial, if necessary.)
- Keep the peace. Try not to present your random ideas about what other people should or should not do but volunteer your help to whoever is leading on the care.
- Be kind. This is not only to the person with dementia and the other family members but remember to be kind to yourself. If someone has made decisions and taken actions, your criticism might not sit well so don’t stumble into trouble.
My favourite tale is of two brothers on either side of the world, and one says to the other, “If mum is getting agitated, you should take her for a swim. She loves that.” His brother replied, “I’m just going to put her on the damned plane, and you can do that.” Your helpful suggestions are not always what your sibling wants when he’s telling you it is hard. Sometimes it is best for the family dynamic if you just listen.
Professor Andrews is a dementia specialist and former adviser to the Dementia Trust. After a long career in the NHS, academia and government, June now works as a consultant to Sedaca Ltd, making life better for people affected by dementia. She is the author of Dementia the One Stop Guide.
