There is little doubt that a diagnosis of Alzheimer’s often results in major tensions and difficulties within the family. It changes everything. Because Alzheimer’s is a progressive disease affecting cognition and communication, it threatens relationships inside and outside the family.
Professor Tom Kittwood, sadly now deceased, said "dementia (of which Alzheimer’s is one type) can be understood more accurately as a socially embedded experience, the result of the complex interactions between neurological impairment, life history, health status, social environment and personality." He felt that many of the difficulties people have are due to the social environment that is created for them. We have plenty of evidence to support that way of looking both at caregiving and Alzheimer’s, and we can also point to changes in roles as highly influential.
One of the biggest effects of relationship change is for couples. The speed of deterioration in Alzheimer’s can mean sudden and unexpected changes of roles that add to the stress of adaptation. Coping with financial planning and even tasks such as getting money from the bank and accessing financial accounts emphasise this. For example, when Clare’s huband became affected by Alzheimer’s she did not know how to get money from their joint account or how to use the ATM.
Role changes affect more than you might think. Household chores represent just one aspect of living but includes roles such as, cooking, washing & ironing, DIY, shopping, gardening and much more. The loss of roles is, in many ways, as difficult, problematic and stressful as having to assume additional roles. On the one hand it seems to say the person with Alzheimer’s is no longer capable and an awful reminder that they are not the person they once were, but it also to burden of caregiving.
Caregivers, both professional and family, often worry they lack the skills needed to effectively help someone with dementia. The lack of perceived skill in, for instance, communication can lead to an ‘inverse care law’. This is where people with the most significant levels of cognitive impairment actually receive lower levels of emotional and practical support. In time, of course, it leads to greater isolation and has been shown to be a problem, especially in care homes. Family and professional caregivers can help by understanding how Alzheimer’s affects communication. Here is a link to a sharepost on communication techniques in Alzheimer’s and late stage Alzheimer’s.