Family life forms an everyday part of our existence; families can provide important opportunities to meet our needs for intimacy, love and affection, belongingness, challenge, security and celebration. Families can also provide a source of strength in times of need, providing practical, emotional, financial and spiritual assistance.

In answering the first question, it is likely that the people you have identified as family will be defined as such by virtue of their blood relationship to you; others may be considered by you to be ‘family’ because of the bond you experience with them and are relationships such as marriage, civil partnerships or friendships. Who we define as family has significant variability from person to person, and represents the heterogeneity of family life in the 21st century.

In considering your answer to the second question, it is likely that a number of the activities or events that you have identified will involve the people you consider to be family, which underlines the significant roles that family has in our everyday lives, through the life course. This is no less true for older people, with research identifying that family relationships are of greater significance, influencing feelings of being well, psychologically, spiritually, physically and emotionally.

Two-thirds of people who live with dementia in the UK live at home, frequently with family members, who either live with them or nearby. Families are recognised to be the primary source of support for people living with dementia, and are fundamental to enabling them to remain at home. Even when a person with dementia is admitted to a care home setting, the family continues to be important in their lives, promoting well-being, enabling the person to maintain links with the family and community and in supporting staff to care for them.

Dementia impacts upon intimate relationships, including those in long-term partnerships or marriage. Furthermore, the involvement of family is not limited to spousal relationships, with research evidence highlighting that a range of family relationships are affected, including adult children and grandchildren.

As with other chronic and life-limiting illnesses, it is necessary to acknowledge that dementia impacts upon the whole family. Accordingly, there is a need to develop and deliver effective interventions that can enable families to adapt to and prevent negative outcomes such as depression. In order to achieve this, it is necessary to understand the family experience of dementia, and to consider in what ways services can respond to the needs of families affected by dementia.

Ros and Roy Dibble describe their personal experience of managing the impact of dementia upon their lives. Ros who is 59, has a diagnosis of posterior cortical atrophy (PCA), a variant of Alzheimer’s disease.

From Roy Dibble, Ros’s husband: ‘We have been struggling to start a new way of living/working since Ros was diagnosed as having PCA over a year ago. PCA leaves the person with difficulties of spatial awareness as well as memory problems and Ros has difficulties when driving (she has given up), writing, using the keyboard, walking down steps or stairs or dressing.

Our journey through the process of coping and managing the onset of dementia might be compared with the way in which most of us were taught history at school. We had a Before Crisis (BC) when there was a period of concern that there might be something wrong with Ros, then a realisation that this was a real problem followed by recognition that something would have to be done and that the doctor (GP) would have to be consulted. Looking back, the BC period was as long as three years as we struggled to come to terms with the problem plus the natural reluctance to seek help and visit the doctor.

This was followed by the After Diagnosis (AD) period, which has now lasted for well over a year. Despite the help we have received, Ros has had a constant battle trying to come to terms with a massive loss of independence, largely as a result of not being able to drive a car and the frustration of not being able to perform the simplest tasks that were carried out with ease only a few months before. Having to rely on others has been particularly difficult for a lively, outgoing individual such as Ros.’

For Roy as the carer/partner, there has been an equal loss of freedom and independence coupled with a need to take on, and in some cases to learn, to do many things that were previously managed by Ros.

‘We have tried to ensure that we do as much as possible together in the form of joint tasks in order to keep things as normal as possible. It is inevitable that the situation looks bleak from time to time and that there are good days and bad days. Perhaps the most difficult issue to cope with is the knowledge that the medication only slows down the process of deterioration which results in the constant self-questioning of “why did it happen to me?,” “what will happen in the future?” and “how long will it take?” We have learnt that it is vital that the carer keeps calm and encourages the partner to keep cheerful and to continue to do all of the things that they are able to do as stopping often leads to an inability to continue to carry out the task.

Our constant plea to each other during the AD period is to try to continue to carry on with as much of our former life as possible doing as many of the things that we feel able to do. Maintaining a sense of humour and laughing at adversity is vital. It is rarely possible to do new things or to go beyond what we define as our “comfort zone” but it is essential that we keep trying but not pushing to achieve impossible objectives.’

For Ros, listening to music, walking to the village shop alone to buy small items, going to the post office or supermarket, or helping Roy prepare the dinner are essential means of retaining her capabilities. She has also contributed to work on Alzheimer’s and dementia in a number of areas and finds that talking to people directly or by telephone both helpful and therapeutic. Tiredness, stress and anxiety are the key dangers to be avoided at all costs as far as Ros is concerned.

‘Every day brings new challenges that have to be managed as best they can. The illness has introduced many difficulties for both of us but we have both made adjustments to our previous highly active lives in order to cope with the new situation.’