Dementia Gateway: Getting to know the person with dementia

Working with families

But most of all I thank Paul, Ianthe, Rhiannon, Micheline and Rachel who are my best friends as we walk this roller-coaster of life together. We are adjusting our dance steps to the changing melody of dementia, listening to the music within, as well as being encouraged by the supportive music around us.

Christine Bryden (2005)

Explore the links below now to read more about this topic:

• 1. Why relationships matter Open

  Most people would say that relationships–whether with family, partners, friends, pets, work colleagues or neighbours–are among the most important things in life to them. And most people feel a sense of loss, perhaps profoundly so, when a relationship ends for whatever reason.

  In a relationship with a partner, spouse or close friend, together we can:

  • love and be loved
  • help to manage life's challenges
  • celebrate successes
  • share roles and responsibilities
  • have fun
  • share leisure activities

  But we may also have to compromise on personal life goals, lose some independence and negotiate roles.

  Relationships are important from infanthood onwards. They are crucial for survival when we are babies: the loss of emotional relationships can mean infants fail to thrive even if they are given food and fluids. The importance of relationships continues through adulthood and into later life as they help us to cope with grief and loss and with physical health challenges (Hansson and Carpenter, 1994). For people with dementia, we know that they experience greater wellbeing as their dementia progresses if they have social relationships (Livingston et al 2008).

• 2. Living at home: carers' positive experiences Open

  Two-thirds of people with dementia live at home. The experience of caring for a person with dementia who lives in their own home varies considerably from person to person and will be shaped by many factors including, for example, whether the carer lives with the person. Caring can be deeply satisfying. It can bring a sense of being able to give something back to a parent or partner who has supported the person during their life.

  It can also open up new ways of relating to one another. In research which explored the impact of dementia on relationships between grandparents and their grandchildren, a daughter describes the changing relationship between her young son Peter and her father who has dementia:

  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… Sometimes he will be quite creative so they'll have the cars out and my Dad will do something like make a ramp and make them go really fast which Peter hasn't thought of doing. And it's just small little things like that on such a minute scale and I think Dad finds that rewarding because Peter lights up and thinks he's amazing for doing something on that level. (La Fontaine and Harper 2010)

• 3. Living at home: the challenges for carers Open

  Caring at home can present considerable challenges. Carers have to cope with changes in their relationship with the person with dementia, as well as coping with changes in the person's abilities.

  Over time carers will have to take over an increasing level of responsibility for day-to-day activities and management of the household. These changes may involve taking on new roles, for example managing a partner's or parent's finances, or setting up an appointment with a GP. Changes in the person's behaviour are also stressful for family members, particularly if they do not feel supported or do not understand why the person is behaving in the way that they are. The person with dementia may start to wake often at night, disturbing a carer's sleep.

  Lucy Whitman's book, Telling tales about dementia (2009) includes 30 stories from carers, sharing their experience of caring for a person with dementia. In her introduction, Whitman gives a broad summary of the carers' stories:

  As well as the grief and shock, there is the stress and exhaustion, the relentless pressure and the sheer hard work that caring entails. On top of the daily grind, there are the regular crises–another fall, another infection, another hospital admission, more often than not leading to a further deterioration in the condition of the person you are caring for. There is enormous compassion and tenderness, but also frustration and sometimes resentment–and, inevitably, guilt. There is also the longing to escape.

• 4. When families don't get on Open

  Family relationships are not always positive. The onset and progression of dementia is stressful for any family, but particularly ones where relationships are already strained.

  It is important not to make assumptions about relationships within families. For example, a relationship between a parent and child may have been poor for many years. In this sort of situation it may be very difficult–indeed impossible–for the adult child to be involved in their parent's care. Family members may also have different views among themselves about what sort of support their relative needs, and what sort of help they can each offer. Relationships may deteriorate as a consequence of the decision to place the person in a care home.

• 5. Care homes: carers' experiences at the point of admission Open

  By the time a person with dementia needs to move into a care home, a carer may feel intensely strained, physically and psychologically. Perhaps they are finding it hard to cope with the person's behaviour. The care package of support may have broken down. The health of the person with dementia may have deteriorated significantly.

  For many carers, supporting the person with dementia to move into a care home is the last thing they ever wanted or expected to do and they may feel a profound sense of grief and loss. They may feel sad, lonely, exhausted, even a sense of relief. They may find it hard to acknowledge the feelings they are experiencing.

  In terms of the move to the care home, the carer may feel uncertain or fearful about:

  • their role and relationship with the person with dementia now
  • the new environment
  • how the person with dementia will cope with the move
  • whether the person with dementia will accept the care offered
  • the quality of care that will be offered
  • how others will view them now
  • losing privacy in their life and relationship.

  All these feelings will influence the way in which a carer comes across to staff in the initial contacts and months of the placement. It is important to try to put yourself in the 'shoes' of family members. It may be that the concerns they express–perhaps said in an angry or highly anxious voice–stem from the sorts of emotions discussed above.

  Positive relationships between families and staff depend on care teams making sure that families feel involved (as much as they are able to be) in the life of their relative from the very start of the placement. If strong partnerships between all parties can develop–the person with dementia, families and staff–this benefits the person with dementia enormously. It can help the staff as they try to get to know the person with dementia better. It may also help families as they begin to develop a different and possibly more rewarding relationship with the person with dementia.

• 6. Supporting relationships with families in care homes Open

  Families have a key role to play in supporting their relative living in a care home. Davies and Nolan (2006) say that families can help to:

  • maintain continuity, by supporting the person to maintain their sense of identity through the continuation of loving family relationships and through helping staff to get to know the resident as an individual
  • keep an eye on the person by monitoring the care they receive, providing feedback to staff and filling any gaps
  • contribute to the care home community through interacting with other residents, relatives and staff, taking part in social events and generally providing a link with the outside world.

  Woods et al (2007) suggest a range of ways that care homes can involve families and support the relationship between the person with dementia and their family. They suggest that, before admission, care homes should:

  • provide an up-to-date information leaflet about life in the home and a handbook about the home's policies and procedures
  • encourage families of prospective residents to make repeated visits to the home and to be put in touch with other families of residents
  • visit the person with dementia where possible at home
  • find out as much as possible about the person from health and social care professionals
  • encourage families to make a life story book about the resident.

  Woods et al (2007) also make the following suggestions for how to support and involve families on an ongoing basis:

  • introduce them to new staff and give them the opportunity to say goodbye to staff who are leaving
  • tell them who is involved in their resident's care
  • involve them in care planning and family conferences
  • respect them as valuable members of the care team
  • keep them informed about events and activities happening in the home
  • encourage them to personalise the resident's room
  • give them practical support when they want to take the person with dementia out
  • encourage networks between families of different residents
  • involve them in organising events in the home
  • allow them to bring in family pets
  • make space available for children to visit
  • offer a place where families can stay overnight if the person is very ill or dying
  • ensure that the manager is available to talk with family members
  • create opportunities for families to talk with staff
  • support a relatives group or introduce families to an outside relatives group
  • train staff in supporting family carers
  • provide information to families and support them in continuing their relationship with the person with dementia.

  An example of this type of welcoming approach would be to encourage families to feel that their relative's room is an extension of their own home. Perhaps a woman who regularly visits her husband may like to leave some knitting and magazines in her husband's room to pick up during her visits.

• 7. Life story work: a tool for building relationships Open

  Life story work can be hugely helpful. It gives staff insight into the person they are caring for: their likes and dislikes, family relationships, achievements and so much more. But it can also be a powerful way of getting to know the person with dementia and their family and building up relationships. It also helps families to feel valued by the staff and that they still have a role in helping to care for their loved one.

  Family members can feel very unsure of their place when visiting their loved one in a care home. Working with a member of staff to develop a life story book or box gives them a focus and can be helpful in easing the difficult transition.

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