In the initial phase of the disease, the patient is able to venture out alone, but at some point, he will cease to recognise a well-known street and other landmarks. So it is necessary that the news of the diagnosis is shared with others outside the home, such as the doorman, the mailman or even the owner of the neighbourhood newsstand. Any of these people may be in a position to assist the patient to return home in case he gets lost.
Reaching out beyond the nuclear family also reduces feelings of loneliness and isolation. It may help if the patient and his family have some kind of support system during the process of developing the disease. Many families give some kind of identification documents to the patient in terms of personal data and diagnosis, so he can get help if needed.
As this form of dementia progresses, patients are more at risk when they leave home by themselves. The house will now require structural changes such as grills on windows, handrails on the stairs and other measures to help prevent potential accidents.
As far as family relationships go, I find that all the family members are affected by the presence of the disease. The patient needs a great deal of restructuring and care during the development of the disease. The caregiver often has to deal with fear, insecurity, rejection and interference from other family members, who are in one way or another involved with the affected person.
The marital relationship hangs in the balance. The patient's relationship with children and grandchildren becomes more vulnerable to
Impatience and intolerance in the face of the patient's inconsistent attitudes are some of the most common difficulties we see in the dynamics of these families. When a spouse is the affected party, the situation becomes more complex because caregivers have to deal with their own ageing and health problems, and their own problems may be heightened due to stress.
Unresolved issues may resurface between the couple in times of conflict and disappointment. Feelings of resentment, frustration and guilt that were not addressed in the past come to the fore. The patient now requires more attention and care, since these feelings need an outlet for expression.
Among the patient's children, the first impasse is in deciding whether to institutionalise the patient or keep him/her at home, and deciding who will be responsible for his/her care. Some people believe they will be punishing or even abandoning the patient if they choose to hospitalise him/her.
Choosing to put the patient in a clinic means that constant supervision and care are needed. In many cases, a particular caregiver's presence may make a bigger difference to the development of symptoms associated with Alzheimer's.
On the other hand, keeping the person at home demands that one takes care of one's children as well as the patient. With increasing complications as the disease develops, the caregiver is likely to be in constant conflict with other family members' welfare, and may not be able to bear the fatigue and suffering. Life expectancy and fear of developing the disease themselves are the most frequent concerns aired by family members.
The caregiver's anguish over the continued suffering and loss of a loved one's cognitive abilities can lead to intense feelings that must be shared, else they can lead to illness. Role reversal can also be noticed in the speech of caregivers.
At some point of time, the person with Alzheimer's will be totally dependent on the care of another person. The person who was once a provider and caregiver will need someone to take care of him/her.
Laura Do Vale is a trained clinical psychologist as well as a neuro-psychologist with over ten years of practice. She is currently doing her PhD from the University of Estremadura, Spain. She has practiced at the trauma unit of the Central Hospital of S. Jose; at the oncology unit at Capuchos Hospital, the Children’s Hospital at Dona Estefânia and as the pneumologist at the Hospital of Sta Marta, Lisboa – Portugal. She now works at Muscat Private Hospital. If you have any queries on this subject or another topic related to her area of expertise, e-mail her on firstname.lastname@example.org