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UMEÅ UNIVERSITY MEDICAL DISSERTATIONS
cil 9. •wt.
New Series No 391-ISSN 0346-6612
From the Departments of Advanced Nursing,
Geriatric Medicine, and Psychiatry,
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University of Umeå* Sweden
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îpouses' experiences of living with a partner with
Alzheimer's disease
by
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Christina Sällström
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Umeå 1994
Spouses1 experiences of living with a partner with
Alzheimer's disease
AKADEMISK AVHANDLING
som med vederbörligt tillstånd av Rektorsämbetet vid Umeå Universitet
för avläggande av medicine doktorsexamen kommer att offentligen
försvaras i sal G, Humanisthuset, Umeå Universitet,
lördagen den 19 februari klockan 09.00
av
Christina Sällström
Umeå 1994
UMEÅ UNIVERSITY MEDICAL DISSERTATIONS
New Series No 391 - ISSN 0346-6612 - ISBN 91-7174-858-X
Spouses' experiences of living with a partner with Alzheimer's
disease
Christina Sällström, Departments of Advanced Nursing, Geriatric Medicine and
Psychiatry, University of Umeå, Sweden
ABSTRACT
The overall aim of the study was to gain some understanding of the lived
experience of the care-giving spouses regarding their experiences of the
manifestations of the disease, perception of their own health, the possibility of
influencing the interpretation of the past, the present and future, outlook on
life, surrounding contacts and intimate relationships with their sick partners.
The spouses (n=13) of Alzheimer victims were followed with the help of
personal interviews, diaries and telephone interviews during a two-years
period. The texts was analysed according to a phenomenological-hermeneutic
method. The main findings in the study showed that the spouses own health
remained quite stable over time. Their perception of the development of their
own health seemed to be influenced by how they saw their power to
influence their situation, which seemed to be determined by how they
interpreted the cause of their health problems.
The social network was another important factor for understanding the
spouses' experiences. The findings imply that spouses' images of themselves in
relation to others were important for their perception of the overall social
network. The spouses mostly regarded their relationships positively and their
social networks were described as quite stable over time. The spouse's marital
relationships, in most cases, seemed to undergo changes with the progress of
the disease. Some spouses could maintain feelings of love but mostly the
relationships were transformed into ones of tenderness, pity and estrangement.
The spouses' valuation of their demented partner was mostly in the form of
one of two divergent perspectives. On the one hand, spouses who seemed to
perceive their partner as a person separate from the disease, could function as
complementary ego aids. On the other hand some spouses were unable to
make a distinction between the spouse as a person and the disease.
The spouses' experiences regarding their previous relationship with
parents, value system, philosophy of life, competence and autonomy seemed
to be critical in their experiences of their caring situation. It appears that there
is a sub-group of vulnerable carers, as suggested by the concurrence of
psychological, physical, and social morbidity, along with deterioration in their
marital relationship.
The findings are discussed in relation to searching for meaning, the
importance of significant others, perceiving and valuing the other, and caring
relationships within a life-span perspective.
Key words: Home-care, dementia care, perception of health, social networks,
marital relationship, valuation of the other, life-span development.
UMEÅ UNIVERSITY MEDICAL DISSERTATIONS
New Series No 391- ISSN 0346-6612
From the Departments of Advanced Nursing,
Geriatric Medicine, and Psychiatry,
University of Umeå, Sweden
Spouses' experiences of living with a partner with
Alzheimer's disease
by
Christina Sällström
c/>
lä
O . V
Umeå 1994
Copyright © 1994 by Christina Sällström
ISBN 91- 7174-858-X
Printed in Sweden by
Solfjädern Offset AB
Umeå 1994
To Jan,
Mattias, "Joakim and Tobias
ACKNOWLEDG EME NTS
This study was carried out at the Department of Advanced Nursing, Geriatric
Medicine and Psychiatry, University of Umeå. There are many people who
have contributed to this thesis. I wish to express my sincere gratitude to;
Docent Rolf Adolfsson, my supervisor, who gave me freedom in my
research, but was constantly there for stimulating discussions, encouraging me
both in ebb and flow (economically and in the thought process), and for his
never ending confidence in my ability to do research;
Professor Astrid Norberg, for sharing her vast knowledge. Stimulating and
supporting me in my own growth as a researcher, sometimes by inspiring,
sometimes by questioning;
Professor Gösta Bucht, my mentor, for unending interest in my work, for
giving me a working place, and sometimes for the necessary financial support;
Professor Bengt Winblad, for introducing and guiding me in my first
fumbling steps in the field of research;
Professor Antonio Barbosa da Silva, School of Mission and Theology,
Stavanger for his constructive advice, criticism when reading all the versions of
manuscripts, and his encouragement in difficult moments;
My colleagues and friends at the Department of Advanced Nursing, for all
their support and help in the improvement of this thesis. Special thanks to Inga-
Greta Nilsson for helping me with practical problems and for always being
ready to listen;
My colleagues at the Department of Geriatric Medicine, for all their
interest, stimulating discussions and good advice, despite being in a different
area of science and for good companionship in travelling to conferences around
the world. Special thanks to Karin Stenmark and Katharina Nilsson-Hallén for
their willingness to help in all the practical matters;
Agneta Johansson, Monica Skoglund for excellent transcription of
interviews. Mrs Åsa Sundh and Patricia Shrimpton for skilful linguistic
revisions.
I also wish to thank all the families participating in this study, for sharing
their feeling and thoughts with me over all the years, and for the pleasant
moments over a coffee-break or dinner.
Last and most of all, I would like to thank my family, my husband Jan for all
his love and 'loving care', my children Mattias, Joakim and Tobias for their
patience with a mother who was often lost in meditation
The study was supported by grants from the Delegation for Social Research,
The Joint Committee of the Northern Health Region of Sweden, 'Stiftelsen
Gamla Tjännarinnor', King Gustaf V's 80-year Foundation, Åke Wiberg's
Foundation, Clas Groschinsky's Foundation in Memory, 'Borgerskapets' Umeå
Foundation, Institute of Advanced Studies Åland, The Foundation for Medical
Research Umeå University, L. and H. Österman Foundation, The Royal
Academia of Science, Stockholm
Spouses' experiences of living with a partner with Alzheimer's
disease
Christina Sällström, Department of Advanced Nursing, Geriatric and
Psychiatry, University of Umeå
ABSTRACT
The overall aim of the study was to gain some understanding of the lived
experience of the care-giving spouses regarding their experiences of the
manifestations of the disease, perception of their own health, the possibility of
influencing the interpretation of the past, the present and future, outlook on
life, surrounding contacts and intimate relationships with their sick partners.
The spouses of Alzheimer victims were followed with the help of personal
interviews, diaries and telephone interviews during a two-years period. The
texts was analysed according to a phenomenological-hermeneutic method. The
main findings in the study showed that the spouses own health remained quite
stable over time. Their perception of the development of their own health
seemed to be influenced by how they saw their power to influence their
situation, which seemed to be determined by how they interpreted the cause of
their health problems.
The social network was another important factor for understanding the
spouses' experiences. The findings imply that spouses' images of themselves in
relation to others were important for their perception of the overall social
network. The spouses mostly regarded their relationships positively and their
social networks were described as quite stable over time. The spouse's marital
relationships, in most cases, seemed to undergo changes with the progress of
the disease. Some spouses could maintain feelings of love but mostly the
relationships were transformed into ones of tenderness, pity and estrangement.
The spouses' valuation of their demented partner was mostly in the form of
one of two divergent perspectives. On the one hand, spouses who seemed to
perceive their partner as a person separate from the disease, could function as
complementary ego aids. On the other hand some spouses were unable to
make a distinction between the spouse as a person and the disease.
The spouses' experiences regarding their previous relationship with
parents, value system, philosophy of life, competence and autonomy seemed
to be critical in their experiences of their caring situation. It appears that there
is a sub-group of vulnerable carers, as suggested by the concurrence of
psychological, physical, and social morbidity, along with deterioration in their
marital relationship.
The findings are discussed in relation to searching for meaning, the
importance of significant others, perceiving and valuing the other, and caring
relationships within a life-span perspective.
Key words: Home-care, dementia care, perception of health, social networks,
marital relationship, valuation of the other, life-span development.
Description:relation to others were important for their perception of the overall social network. be helped to the toilet, or will have to wear napkins (17, 45). Apart from these signs of . and friends so as to include the husband/wife. Important
