5/8/2014. Dementia and Difficult Family Conversations: Tips and Tools

Transcription

1 Dementia and Difficult Family Conversations: Tips and Tools Carol Podgorski, PhD, LMFT Associate Professor of Psychiatry Director, Finger Lakes Alzheimer s Disease Assistance Center Co-Director, Family Therapy Training Program May 7,

2 Objectives Participants will learn: 1) How to think about family systems and functioning 2) How family functioning affects dementia outcomes 3) How to prepare for difficult family conversations 4) How to start difficult family conversations 5) Applications of these strategies as they relate to conversations about Driving Legal and financial matters Long term care decisions 3 Some preliminary considerations Dementia manifests itself differently in every person Every family is unique Every family member experiences their family differently Every family has its own strengths and challenges It is easier to change one s self than to change someone else We are not islands we all belong to family systems YOU are the expert of your own family 4 2

3 What is a Family System? Definition: A group of related people consisting of parents and children. It is a set up in which every member has a role to play and rules to respect. The relationship agreements in a family system dictate how people respond to each other. A family system functions because it is a unit Every family member plays a critical, if not unique, role in the system It is not possible that one member of the system can change without causing a ripple effect of change throughout the family system

4 Systems Theory Family Roles: what is expected of each family member Family Rules: are rules, often unspoken, about how the family operates Homeostasis: a kind of inertia which works against change in the system A key feature of the systems view of families 7 8 4

5 Systems Theory Goal in family therapy: to explain how psychological an relationship problems emerge from the functioning and dynamics of family systems emerge from NOT caused by It avoids linear causality i.e., this caused that Therapy goes beyond identifying the troublemaker(s) and persuading them to change. The family must be ready and willing to look at what we as members of the system must do together to improve relations in the household rather than what any individual must do. 9 Family functioning 10 5

6 Dimensions of Family Assessment Developmental issues Structure and organization Family rules, roles, and responsibilities Family life cycle Family of origin issues Strengths Attachment, problem solving and communication patterns Coping styles Meaning 11 Dementia and family functioning What is family functioning? Communication: extent to which the verbal messages that are exchanged between family members are clear with respect to the content and direct in the sense that the person spoken to is the person [to] whom the message is intended Problem solving: extent to which the family s ability to solve problems is at a level that maintains family functioning. Role performance: extent to which the family has organized patterns of behavior for operating family functions AND consideration of whether there are assigned tasks within the family and whether they are carried out responsibly 12 6

7 Dementia and family functioning Affective Responsiveness: degree to which family members express appropriate affect in the presence of a range of stimuli Affective Involvement: assesses the degree to which family members are interested in and take value in other members concerns. Behavior Control: assesses the way in which family members maintain standards of behavior within the family system. Taken from the Family Assessment Device (Epstein, Baldwin & Bishop, 1983). 13 Structure and Organization Family rules: When people are angry at each other, do they express this or keep it to themselves? How affectionate or emotional are family members expected or allowed to be with each other? How do decisions get made in the family? Who has input and who is expected to just go along? How is the final decision made? Are there limits on how much or in what ways kids can argue with their parents? How much are family members allowed to talk to people outside the family about family problems? Family roles and responsibilities: what is expected of each family member Both formal and informal Examples: martyr, victim, rescuer, good child/parent, bad child/parent 14 7

8 Examples of family dynamics Power struggles Parental conflicts Lack of validation Lack of intimacy Examples of family patterns Distancer-pursuer Overfunctioner-underfunctioner Emotional-logical Good/bad parent Note: circular causality! 15 Dementia and family functioning Family functioning before dementia predicts the quality of the caregiving experience. Compared with caregivers with low satisfaction, caregivers with preexisting high satisfaction in the family relationship demonstrate: Less burden Less reactivity to memory and behavior problems Better problem-solving skills More effective communication Steadman, Tremont and Davis,

9 Dementia and family functioning Poor quality relationships between CG and CR predicts CG depression and anxiety. People with dementia exhibited more behavior problems, anxiety, and paranoia when: They perceived their CG becoming more distant They had spouse CGs with avoidant attachment CGs began to experience a deterioration in their spousal relationship 17 Dementia and family functioning Families that use positive conflict resolution methods provide significantly more help than families that do not. Families that assign decision-making responsibilities to a single family member with at least some input from others provide more help than families that use more democratic but potentially more disorganized methods. Leiberman & Fisher (1999) 18 9

10 Family conflict 19 Dementia and family conflict Prevalence rates of conflict in families with dementia range from 55-82% Conflict is: Highest and most serious among offspring Most often reported by women Most often surfaces in mild to moderate dementia Family conflict contributes to: Nursing home admissions Hospitalizations Treatments that are costly, both financially and emotionally, and do not reflect the wishes of the person with dementia 20 10

11 Dementia and family conflict Family conflict increases: Caregiver burden Poorer family functioning Barriers to/premature nursing home placement Caregiver depression, anxiety and anger Poorer outcomes for the person with dementia Increased memory problems More behavioral symptoms Decreased physical function 21 Family conflict Why do disagreements arise? Dementia is a BIG family stressor Roles and rivalries from childhood Disagreements over an older adult s condition and capabilities Disagreements over financial and other practical matters Burden of care

12 Sources of tension 23 Sources of tension Dementia related Seeking a diagnosis Safety of living situation Developing plans for assistance family, professionals, move, etc. Driving How to use resources; whose resources; whose decision 24 12

13 Sources of tension Differing opinions on what is best for Mom/Dad Different opinions on what Mom/Dad would want Not wanting to upset spouse/parent Lack of clarity about who is in charge Some decisions result in big losses Availability of resources Too much to do, to learn, to know Perceptions of inadequate help or support 25 Sources of tension How families deal with change and make decisions Noticing changes or not Perceptions of degree of change vary Coping styles vary Planful problem solving Self-control Confrontative Distancing Seeking social support Positive appraisal Accepting responsibility Escape/Avoidance 26 13

14 How families make decisions Roles of family members: Gatekeeper Influencer Decision maker Buyer Consumer Engel, Blackwell, and Miniard (1990) 27 How families make decisions Areas of conflict within the family Who should make the decision How the decision should be made Who should implement the decision Doyle and Hutchinson (1973) Conflicts arise from two sources The reasons for making the decision The evaluation of alternative choices Blood (1960) and Sheth (1974) 28 14

15 How families make decisions Modes of conflict resolution Problem solving** Bargaining Persuasion* Politics 29 Difficult Conversations 30 15

16 Difficult conversations Important considerations 1) Person with dementia s personality, relationships, wishes, etc. 2) How your family functions, especially with important decisions 3) YOUR dynamics -- role, perspective, wishes, personality, coping 4) Other family members dynamics 31 Preparing for difficult conversations 1) Why am I doing this? What is your purpose for having the conversation? What do you hope to accomplish? What would be an ideal outcome? 2) What assumptions am I making about the other person s intentions? 3) Emotions What buttons of yours are being pushed? Are you more emotional than the situation warrants? What personal history is being triggered? 4) How is your attitude toward the conversation influencing your perception of it? If you think this is going to be horribly difficult, it probably will be 32 16

17 Preparing for difficult conversations 5) Reframe opponent(s) as partner(s) Who is the opponent? What might they be thinking about this situation? Are they aware of the problem? What are their needs and fears? What solution do you think they would suggest? 6) Search for commonalities What are your needs and fears? Are there any common concerns? Could there be? 7) How have you contributed to the problem? How have the others? 33 Having the conversation 1) Go in not knowing anything and learn the other s perspectives and what they know and how they came to their position 2) Show that you ve heard and understood them and their position 3) Clarify your position without minimizing theirs and add something that they might have missed 4) Begin problem solving. Find something you like in whatever the other person says 5) Go back to asking questions if conflict arises 34 17

18 Starting the conversation I have something I d like to discuss with you that I think will help us work together more effectively. "I d like to talk about with you, but first I d like to get your point of view." "I need your help with what just happened. Do you have a few minutes to talk?" "I need your help with something. Can we talk about it (soon)? "I think we have different perceptions about. I d like to hear your thinking on this." "I d like to see if we might reach a better understanding about. I really want to hear your feelings about this and share my perspective as well." 35 Other strategies Empathy Choices Bargaining Bring in an outsider 36 18

19 Driving 37 Driving 38 19

20 Driving: Dennis Family 39 Long Term Care 40 20

21 Long term care: Marshall Family 41 Financial and legal matters: Kendrick Family 42 21

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